Elizabeth Munroz

Your New Normal

When you are well. When all the worst is over. When the Oncologist says those magic words, “you’re cured”, or “just come back for a yearly check”, you might be asking yourself, “What now”? How does one return to normal? Most will say, you don’t. At this point one can celebrate having a new normal.

The next step out of the medical mayhem and closing the door on it, is learning how to create that new normal. With the vast changes your body and mind have been through, one does not arrive unscathed. Those you love cannot have been unaffected. They have a new normal too. Developing the new normal may take a few stabs in the dark, in order to uncover what new adjustments you will embrace. It could be something as simple as having your bedsheets not tucked in anymore due to neuropathy. You may have other symptoms, or changes in your body that will forever remain the same, or with time, change or improve slowly. During this time, it may be necessary to sleep more than usual, not expect yourself to have the energy you used to have. And most importantly in relationship to this, is to let go of having expectations that you must have more energy and not be down on yourself for not trying harder.

Creating your new normal means scrutinizing the changes, adapting your life to fit them, accepting that there are healthy ways to cope and adjust. The new normal doesn’t happen overnight all by itself. It’s kind of like moving to a foreign country. Your life, your habits, your way of being are all challenged to live in this other country, in this new cultural millieu. You would expect it to be this way, that adjusting to new things might take strategy and development of new habits, perhaps learning a new language.

You have probably already learned the language of “medical speak”, enough to have intelligently discussed things with your doctors. And now that you are not seeing those doctors anymore, or considerably less, you are faced with either finding an new primary physician and teach him about your rare sarcoma diagnosis, treatment, recovery and long term effects. Perhaps you are lucky enough that the one you already saw before has been following your progress all along. Perhaps records have been forwarded efficiently and he or she has learned more about sarcoma than was touched upon in medical school. After all sarcomas are probably not dwelled upon to any great extent. However, it is quite possible that your primary care physician hasn’t seen you in a long time, your records have not been forwarded, and he may need a refresher course. That’s where your new language skills come in handy. You’ve learned enough about your particular sarcoma that you can talk about it intelligently.

Hopefully, you have been collecting copies of your records and scans all along. Perhaps you were too concerned with getting well and just let that idea set aside. You had to do what you had to do. But, now, even though you might wish to leave the sarcoma experience behind you, it is important to bring home the souvenirs, your records, your evidence of what happened, so other doctors in your future, will be able to make sense of it. It is no different than leaving the old country behind you. It may not be there anymore, but the experience of it stays with you. This can be looked at as a good thing.

If you have long term effects from surgery, or treatments, it pays to remember, to reevaluate how they are affecting your new normal life. Have a limp? Continuing pain? Weakness? For some there may be no signs at all. But, for those who do have issues to continue to deal with, it’s important to clearly establish what they are and be sure your new primary doctor knows about them and the need to follow up on them. If you have orthopedic issues, you might need to be referred out for physical therapy once in a while, or to a heart or kidney specialist if you have had chemo, just to have things checked out.

Sometimes keeping a progress chart, a notebook or journal, you can keep track of your improvements in the new normal. You might be pleasantly surprised to learn that there is continued improvement in what you thought might be a permanent ongoing problem. You might notice you’ve gained back muscle strength or stamina, or more energy to get through a day, or the depression or sense of doom has disappeared, or the neuropathy has turned down a notch.

Your new normal may include changes in lifestyle, a less stressful schedule, eating foods considered more nutritious, the addition of vitamins to your life, meditation, or exercises that you might not have had in your life before. You may even change your social circle. The new normal lets you explore who you were before the diagnosis and who you have become throughout your experiences, that person who was challenged more than one could imagine, that person who faced the worst and came out the other side. And, yes that person who became courageous by enduring and doing what had to be done to get through it all.

About Sarcoma Alliance

The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support.