In September 2005, I was diagnosed with Hodgkin's lymphoma. I was 24 years old and left with an uncertain future. On this site, I blogged my experiences while undergoing high dose chemotherapy and an autologous stem cell transplant (my own stem cells). I hope the "personal" experience will help anyone facing this procedure. It's very easy for doctors to explain the technicalities of a transplant, whether it's a stem cell or bone marrow transplant, but they can almost never fully prepare a patient for the journey they are about to embark upon. I personally believe that the more knowledge of what to expect and a positive attitude can make the entire experience as pleasant as is humanly possible.
This is a note from Bobbi's (Kilalita's) dad: In the middle of March Bobbi contracted pnuemonia and was hospitalized. Due to her weakened immune system from chemotherapy, she went almost immediately to intensive care and was placed on a ventelator. Despite the greatest care, her body was not able to match her great spirit and after 6 weeks, she lost her great struggle and on April 24.2007 the machines were turned off and her suffering ended.
I will pass along any messages anyone would like to send to all of her family and may be contacted at oldhippie825@aol.com
As of January 2007, I am being prepped for an allogenic (donor) transplant. I have relapsed yet again, this time with Hodgkin's in the base of my right lung and possibly in my liver. I intend to blog this experience as well. I certainly hope that I live to look back at these both some day and remember and appreciate the experiences.
Link Information:
Some of the links I have included on this site are places that support Hodgkin's patients and patients with other blood cancers.
1. Planet Cancer - An excellent web site for young adults with cancer (of any sort) The community of Planet Cancer deals with so many problems that are almost never addressed. (Putting college and career on hold, infertility, relations, having small children and many other issues that are unique to the age group.) Planet Cancer also sponsors several cancer retreats, to bring these young patients together and form bonds. It's very reassuring to meet other people that have lost out on an important part of their life to these diseases.
2. Leukemia & Lymphoma Society - A web site that offers much information on blood cancers and offers assistance to those of us dealing with financial hardships on top of cancer. (Cancer itself creates many of these hardships) There is also a community of wonderful people that share their own experiences with the diseases.
3. Violet Ribbons - Like the "pink" breast cancer ribbons, Hodgkin's "violet" ribbons can be purchases to help spread awareness of the disease and to help fund research. Violet is our official color (hence the amount of it used on this site)
4. Cure Hodgkin's - Another site that is dedicated specifically to Hodgkin's Lymphoma and supports the "Violet Ribbon" campaign.
5. Hat and Hair - I ordered a hat and hair piece from this web site. The hair looks real, is affordable and easy to care for.
6. Look Good, Feel Better - An amazing organization that helps women and men both, feel better on the outside so that they can feel better on the inside during a very difficult time of their lives. During my Autologuous transplant, I was given a free wig and bag full of lotions, make up and other things for me to use after I returned home and began my recooperation.
7. Bone Marrow Registry - World wide there are only about 10 million people listed on the Bone Marrow Registry. This is simply not enough! I would like to spread the word about the registry and get many more people on there. Out of these millions of people, a patient is lucky to find one or two good matches, if they find one at all. Stem Cell harvesting is a relatively harmless procedure where the donor is given injections for several days that will spur the bone marrow to produce an abundance of cells then push them into the blood stream. These cells can be retrieved through peripheral blood draw. The blood is run through a machine where cells are separated by volume and weight. "Stem cells" or undeveloped blood cells (white blood cells, hemoglobin and platelets) are stored away for the patient's use, while the donor is given back the rest of the blood. The only pain involved is a few needle sticks. The donor may need a day or two of relaxation until their own counts return to normal, but there are rarely side effects.
When bone marrow is needed, the donor is put under a general anesthetic. A large needle is inserted into their hip bone in several places and approximately one or two liters of marrow is extracted. There are no stitches or incisions required and the donor will often be fine within a week of the procedure. Bruising is the main side effect of bone marrow donation.
It can cost around $50 for the blood testing required to place a person on the registry, which can be used as an income tax deduction. But most importantly, you could be saving a life and I don't think you can put a price on that. (Note: Once a donor is contacted on behalf of a patient, all medical costs are billed to the patient's insurance. Donors do not pay for any of these fees)
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