Moving, Exericse and Walking are essential in Healing process

Todd stands outside his hospital room ready to go on a walk for the first time without his IV pole! If you walk the "L" shaped hallway of the11th floor round trip, the distance equals 1/6 of a mile.  Todd usually likes to walk all six laps at once, but sometimes he will just walk three laps in the morning/afternoon and three laps in the evening so he can get at least a mile of walking in.  Sometimes he will also go to the exercise room afterwards to use the sit-down elliptical machine or treadmill.

If there is one thing I have learned from the bone marrow transplant process (from observation and from talking with other families here) it is this:  the patients who get up out of bed and walk and/or exercise are the most successful in getting out of here and sooner!

For those who lay in the bed because they are having difficulties or who just don't have someone close to them to gently give them a prod and a push to get moving, their progress and length of stay is much longer and harder.  There comes a time when the family and/or caregiver have to exercise some "tough love" and insist on getting the patient moving.  Enabling and pitying them does them NO favors.

While I understand that every person's situation is different: the type of cancer they have, their age, their health prior to admission, the type of chemotherapy, the type of transplant, and how their body heals and recovers, I still feel that getting up and getting moving is essential for recovery. 

The bone marrow transplant binder that is given to patients prior to transplant recommends that the patient "Walk in the hallways 4-6 times a day" in addition to sitting in a chair for all meals, walking to the bathroom, using the exercise room on a regular basis, and to going to the family lounge to visit, use the computer, etc.  (Cleveland Clinic, 2011).  While every patient can have a bad or "off" day from time to time and just cannot get out of bed, these shouldn't be everyday.  Exercise keeps the patient from developing hindrances like pneumonia while promoting muscle and bone strength, stress relief, and better balance.  Personally, I think it can help work up an appetite and provide a change of scenery from the same four walls!  It is a great way to meet others who are going through the same process and compare recovery strategies.

Difference in Transplants regarding length of Hospitalization time:

Autologous bone marrow transplants use their own stem blood cells harvested prior to chemotherapy  to be transplanted or infused on Day 0/Transplant Day.  There is no risk of Graft versus Host Disease since they receive their own cells, so these patients are not required to stay hospitalized as long, nor are they required to stay near the hospital for the 100 days after transplant.  From my observation of the patients on the floor with us, those with Acute Lymphoblastic Leukemia (ALL) or Non Hodgkin Lymphoma often have this type of transplant.  These patients have their Hickman Central Venous Catheter removed before discharge from the hospital. 

Allogeneic bone marrow transplant, like what Todd had, is when the bone marrow is from another  donor who is either related or unrelated, a partial match (where 4 key HLA matches are found) or a full match (all 8).  Todd's brother happen to be a full 8 point full match.   According to the National Marrow Donor Program:

Each brother and sister has a 25%, or 1 in 4, chance of matching you, if you have the same mother and father. It is highly unlikely that other family members will match you. Under very rare circumstances, family members other than siblings may be tested...About 70%, or 7 out of 10, patients who need a transplant do not have a suitable donor in their family.  (National Marrow Donor Program.  1996-2014.)

We feel so blessed that out of two brothers, only 1 out 2, was a match for Todd.  It is believed that full matches have less chance of developing Graft versus Host disease or other complications.  We have met about four other families who were only able to find a partial match; most where children or siblings.  We meet two other patients besides Todd who received a full match donation.  One patient received his bone marrow donation from someone in Germany.  In his case, the bone marrow was collected from the donor in Germany and then was frozen and flown to the Cleveland Clinic.  In Germany, it is MANDATORY that ALL German Citizens become donors!  The majority of the patients we have met on the floor have had Acute Myloid Leukemia (AML) or Chronic Leukemia.  Because of the risk of Graft versus Host Disease, these patients have to remain within an hour drive of the Cleveland Clinic for about 100 days and take immunosuppressant drugs to prevent GvH.  These patients have to keep their Hickman Central Venous Catheter in place through the 100 days in case treatment or re-admission is needed.

Some other setbacks that can happen include: fever, infections, infection in the Hickman Catheter (Central Venous Line), nausea, severe diarrhea including C-dif, vomiting, severe headaches, mucositis and esophagitis (which can be so severe that morphine or another pain medication must be administered). These complications or the age of the patient can also make exercise difficult. They are often identified with a sign outside their door as a "fall" risk because they are at risk of falling down. This is obviously a major hindrance to walking.  One of the elderly patients in the leukemia side of the floor had such a hard time walking that she pushed a walker while her son held her up from behind.  I think they too realized the importance of walking and moving, no matter what it took.

Todd has been so fortunate not to have any serious side effects or setbacks.  Yes, there have been several days that he didn't get out of bed at all.  Yes, there were days he needed to be prodded to get out of bed by me or his doctor or nurses, but in pushing himself on most days, he has recovered so well that he is almost ready to be discharged!  Will I still have to push him to walk?  YES!  Everyday! It is still important that once he is discharged to continue to get his exercise.  Then we can walk at the mall, grocery store, in a museum (during non-busy times), a park, or neighborhood.

As I have gotten older, I have learned how important staying active is to having good health.  This experience has reinforced to me that we need to make exercise part of our everyday routine, for the rest of our lives.   

References:

Cleveland Clinic Foundation. 2011. Staying Active During Your Hospital Stay. Index #14676.

National Marrow Donor Program.  1996-2014. Web. http://bethematch.org/For-Patients-and-Families/Finding-a-donor/HLA-matching/

Cancer Etiquette: How to talk to people with Cancer.

I just read an insightful article written by Rosanne Kalick, titled, "Cancer Etiquette: A Survivor's Perspective on Effective Communication" which was in the Caregiver's Guide for Bone Marrow/Stem Cell Transplant produced by the National Bone Marrow Transplant Link (2007). This article is a just a taste of her book, similarly titled, Cancer Etiquette: What to Say, What to Do When Someone you Know or Love Has Cancer.  (Available at Amazon: http://www.amazon.com/Cancer-Etiquette-What-When-Someone/dp/0874604508/ref=sr_1_1?s=books&ie=UTF8&qid=1409238495&sr=1-1&keywords=cancer+etiquette). 

There was so much great information in the article (link attached).  I learned some things that I will take to Cleveland with me and try to apply when I talk to Todd or ask him questions.  For example, instead of asking how he is, ask, "How are you today?"  (p. 16).  Another admonition: "don't tell the patient how great he looks" but instead say "You are looking stronger today."  She gives advice about statements that dismiss concerns, like "you're not going to die" and identifies sensitive topics to avoid discussing like: hair loss, personal issues (sexual side effects), and/or your own strong religious views unless these were topics you were able to discuss openly before the cancer diagnosis. (p.16-17).

The best advice she says she can give: "When in doubt about what to say, don't say it." The most important words to say instead are: "I love you."  (p.17).

In offering help, Kalick says to be specific about what help you can offer.  Instead of saying things like, "Let me know if I can help" or "If you need me, I'm here" say (for example), "I'm available on Monday evenings to run errands" or "Can I bring a meal on Friday?" (p. 17).

Kalick gives some advice about visiting I found useful. She says that your presence, touch, or hug is often more important that words or there may be times when "silence may be best the connector." (p. 17).

She wraps up the article by giving suggestions or guidelines for gifts.  Transplant patients are much different from other patients in regards to what they can eat, touch, or have in their room.  Magazine subscriptions, CDs or books that are "short and light," emails, video messages, photos, or jokes are good suggestions. (p.18). I have also read that soft blankets or hats/beanies are nice for any cancer patient.  She says to "plan for the long haul" and "work in community" when giving support to a family dealing with cancer. 

I have a general mailing address for Todd, but we won't know his room number until he is admitted.  I will post this information all at once when I get it on September 7, 2014 if anyone wishes to send a note of encouragement.  In the meantime, I am putting together a photo album to take with us.  If you would like to send me a funny or cheerful photo via email or snail mail, I would love to include it.

I wish I had read this article sooner.  It has helped me to re-evaluate my words and my actions when addressing cancer patients.  Hope you find a moment to read it!

Please follow this link to read the short three-page article: http://www.nbmtlink.org/resources_support/cg/cg_dontknow.htm