My Story

The Beginning

My journey with Non-Hodgkin’s Lymphoma (NHL) began in August of 2000. In December of 1999 I turned 30 and was looking forward to enjoying my life now that we were done going through such major life changes as getting married, having children and buying our first house. I thought life was going to settle down a bit. Boy was I wrong.

Four months after our second daughter was born I found a lump in the groin area of my right leg. Being a hypochondriac, my first reaction was, cancer!! Not wanting to mess around with this discovery I immediately saw my PCP. She did some blood workup (which came back normal) and consulted another doctor. I was then referred to a surgeon who confirmed that it was a lymph node. I had no clue that lymph nodes were even in the groin area. Considering my age, the surgeon thought that it was possibly Hodgkin’s, which he told me was 98% curable with treatment. Well, that didn’t sound so bad. I figured the odds were with me for this turning out OK. After waiting for a month to see what would happen we decided it was time to remove and biopsy it. We were all shocked to discover that it was indeed Non-Hodgkin’s Lymphoma.

Hodgkin’s Disease:
A form of lymphoma named for Thomas Hodgkin, the physician who identified the distinctive double-eyed cells that distinguish is from non-Hodgkin’s lymphoma. Characterized by enlargement of lymph nodes, the spleen, or other lymphatic tissue, it is sometimes accompanied by symptoms such as fever, weight loss, fatigue, and night sweats.

Non-Hodgkin’s Lymphoma (NHL):
A group of cancers of the lymphoid system, including B-cell lymphoma, follicular lymphoma, and mantle cell lymphoma, as well as T-cell lymphomas like lymphoblastic lymphoma and mycosis fungoides.

Information source: “Targeted Therapies for Non-Hodgkin’s Lymphoma” by Cathy Dunn Cure magazine, Vol. 1 No. 1/Spring 2002

Staging

Now, the real fun began. I was told by many people in the medical field that if I wanted to see my children grow up that I had to treat the cancer aggressively. If the oncologist I was to see didn’t want to treat it aggressively I needed to seek one out that would. I was lucky to be referred to one that did believe in aggressive treatment. Our first visit was nerve racking. My husband and I were both filled with fear of the unknown. The word cancer fills everyone with dread. Cancer usually equals death. We took along a tape recorder and a list of questions to ask our oncologist. Our appointment took about an hour. The doctor explained to us what cancer is. He explained to us what NHL was, the different stages, the history of how it was treated, how they treat it now, the different tests I’d be going through, treatment options as well as my prognosis. Still filled with much fear but feeling a little better about what was invading my body, we set out to begin the staging process.

The first test I had to endure was a Bone Marrow Biopsy. During a BMB, the doctor numbs the skin area where the procedure will be performed. A thin needle is inserted into the hip where the doctor can withdraw a small sample to be tested. I found this procedure to be painful even though I was given a drug to help me forget it all. I know I fell asleep but I do remember two very painful jabs in my hips but that was it. Afterwards, my back hurt for about a month.

The second test I had to go through was a CT scan. A CT or CAT scan stands for Computerized Axial Tomography. A CT scan will take x-rays of the body from different angels. These different x-rays are combined in a computer so that you have a digital image of your body. Most NHL patients have CT scans of their neck, chest, abdomen and pelvis. For me, CT scans were relatively easy. I had to drink barium (their lovely banana smoothie) the night before and the morning of the scan. Then, before the scan I was given contrast to drink which had a lovely flavor of Tang…YUCK! I had to lay down on a thin table that moved me through the scanner that looked much like a large doughnut. An initial scan is taken for alignment. Once that was done I was told not to move. An IV is placed into the arm and iodine is injected into your body. While the iodine is running through your body the scans are taken. I had no problem with the iodine. It made my face feel warm and I had a funny metallic taste in my mouth.

The last test I had to complete was a PET scan. PET stands for Position Emission Tomography. It takes powerful images of your body’s biological functions and shows the chemical or metabolism function of an organ or tissue. First, a blood sample is taken to test the glucose (blood sugar) level. Then, you’ll be injected with a small amount of radioactive glucose which is called a “tracer”. This will be distributed throughout the whole body. After the injection, you are required to remain still so that things can begin to work. I was given some medicine that made me sleepy. Seeing how I had just had a baby who wasn’t sleeping though the night, I used this time to get caught up on much needed sleep. When the scan beings, you are asked to lay on the scanning bed. This bed moves you through the scanner so it can detect the tracers within the body. The most uncomfortable thing I had to endure was the catheter.

After we had the results of these tests we were able to determine what stage I was in. It was determined that I had Low-grade b-cell, follicular small and large cleaved Non-Hodgkin’s Lymphoma, Stage I (Stage 1 being early disease and Stage 4 being widespread). Low-grade lymphomas grow slowly and are referred to as indolent. Unfortunately, there is rarely no cure which is why we need to step up the awareness of this type of cancer.

Staging of Non-Hodgkin’s Lymphoma:

Stage I lymphoma: Cancer is found in only one lymph node area or in only one area or organ outside the lymph nodes.

Stage II lymphoma: Cancer is found in two or more lymph node areas on the same side of the diaphragm (the muscle under the lungs that helps breathing). Cancer is found in only one area or organ outside the lymph nodes and in the lymph nodes around it. Other lymph node areas on the same side of the diaphram may also have cancer.

Stage III lymphoma: Cancer is found in lymph node areas on both sides of the diaphragm. The cancer may also have spread to an area or organ near the lymph node areas, to the spleen, or to both.

Stage IV lymphoma: Cancer has spread to more than one organ or organs outside the lymph system, including bone marrow, and, less commonly, organs such as kidneys, brain, or skin. Cancer cells may be found in the lymph nodes near these organs. Or, cancer has spread to only one organ outside the lymph system, but lymph nodes far away from that organ are involved.

Information source: “Targeted Therapies for Non-Hodgkin’s Lymphoma” by Cathy Dunn Cure magazine, Vol. 1 No. 1/Spring 2002

Treatments

I know there are different methods of treating NHL and other cancers but I’ll only cover my personal treatment plan. My treatment lasted five months and consisted of Chemotherapy, Rituxan and Radiation.

The type of chemo regimen I went though is commonly known as CHOP. It’s a lovely cocktail of Cyclophosphamide (Cytoxan), Vincristine (Oncovin), Prednisone (Deltasone) and Doxorubicine or Hydroxydaunorubicin (Adriamycin, Rubex).

The side effects range from hair loss, nausea, bladder bleeding (in higher doses and can be prevented by drinking lots of water), numbing in the fingers and toes, fatigue, mouth sores, diarrhea, skin rashes and sometimes damage can be done to the heart muscle in high doses. The first CHOP treatment was the worse for me. I got sick within 2 hrs. of treatment, ended up getting mouth sores and ringing in my ears which turned out to be an ear infection. The Prednisone was the worse part. It made me agitated, very hungry and caused me to suffer from insomnia. All in all, CHOP was hard to endure but it was really not as bad as I thought it would be.

Rituxan is a Monoclonal Antibody treatment that is “approved for the treatment of relapsed or refractory low-grade or follicular, CD-20-positive, B-cell, NHL.” (understanding Non-Hodgkin’s Lymphoma, A Guide for Patients). It targets the CD-20 antigen and kills both the cancerous and normal B-cells. Basically, it uses the body’s own immune system to fight the cancer. Kind of like boosting the body’s natural defenses against disease.

I had little trouble with this drug and found it to be easier then CHOP. The first infusion took me seven hours. The first thing given to you is Benadryl. It helps minimize the possible side-effects. The Benadryl totally knocked me out and made my body feel very heavy. The Rituxan will be started out at a very slow drip which is increased if side-effects do not present themselves. The only side-effects I experienced were hives and a fever. Once I developed these side-effects, the Rituxan was stopped and I was given more Benadryl. Then, the Rituxan was started again but at a slower drip. Some of the possible side-effects are fever, shaking chills, tiredness and headache. Some of the more serious side-effects are dizziness, shortness of breath and the sensation of tongue or throat swelling. The side-effects are less common after the first infusion. After my first treatment I felt tired and had flu-like aches and pains and a major headache.

Radiation was my last step towards good health. I went in every day for 30 minutes for 17 days. Because the radiation wasn’t going to hit any major organs, I was able to get by with few side effects. The first thing that is done before you can begin radiation therapy is Simulation. This is the process that helps the doctor plan your treatment. You are asked to lay on a table wherein the technician will take pictures, x-rays, and then will mark your body to help the radiation therapist aim the radiation in the correction location. I was given tiny dot tattoos for this. Every day I would go in, lay on the x-ray table where the radiation therapist lined my body up with the special plate that was created just for me. Everyone left the room and the treatment begins. It only takes about 30 seconds and doesn’t hurt at all. The side-effects I had to deal with were at the end of my treatment and 2 weeks afterwards. My skin had a moist reaction and pealed and hurt. They say it feels like a bad sunburn…..it’s a lot worse.

Hope for the Future

It’s coming up to the month when I was diagnosed. I’m finding it hard to believe that the year has come and gone. So much has happened. Today, I’m feeling a lot better. I still get tired when I overdue it but I’m starting to feel “normal” again. My hair is growing back so fast that I’ve had it cut twice. It’s a totally different texture and one that I’m having a hard time getting use to. But, it’s hair and I’m glad to have it back.I’m glad the fear and anxiety of having cancer is behind me. I’m still not happy that I have to deal with this for the rest of my life but I am happy to say that I’m alive. I’ve learned that a person can live with cancer and live a very productive happy life. Cancer doesn’t have to equal death or make you into a “sick” person. It can be overcome.

I feel blessed that I have family and friends that love me so much that they spent this past year supporting and encouraging me throughout my treatment. Without their love and support, I don’t think I would have been able to get through it like I did.

My main source of comfort has come from knowing the Lord. Without his loving hand covering me, I don’t think I could have endured my ordeal as well as I did. I don’t know why I was bit by the cancer bug but I don’t blame God for “giving it to me”. Without having cancer, I wouldn’t have learned to grow closer to Him and my family and friends. I wouldn’t see how beautiful life really is and how precious my family is to me.

I see myself with two lives: the one I had before cancer and the one I have after cancer. Last year at this time, I was angry that I had these two lives. I was angry that my life had to have the word, “cancer” attached to it. I was angry that I had to mourn the life I thought I was going to miss out on. To tell you the truth, life is so much better for me now. I still dislike having to endure cancer and treatment and the threat that it will come back. What’s different is that I’m at peace with the life God has given to me. My cancer life verse is Jeremiah 29:11 – “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

I want to thank my parents for the countless days they spent watching over the girls for us during my appointments and treatments, cleaning my house, making dinner and just sitting with me. Thanks to my in-laws for the lovely cards, phone calls and coming over to watch the girls so that Eric and I could escape for a couple of days to recuperate. Thank you my lovely little girls for enduring my endless crankiness, moodiness and lack of energy to go out and about. Thank you my Message Board Family for the love you’ve given to me. You are a wonderful source of information. I know I can go to you any time of the day or night and someone will be there to answer my questions or let me vent. Thanks to my best friend, close friends and church family for your prayers, phone calls, cards of encouragement, laughter and hugs.

And lastly, I want to thank my husband, Eric for sticking by his vow to love me through sickness and health. I don’t know how you were able to work and take care of the girls and me. Thank you for lending me your shoulder to cry on. Thank you for shaving my head. I know it was one of the hardest thing you had to do but I wouldn’t have wanted anyone else to share that moment with me. Thank you for wearing a matching Santa hat at the Company Christmas Party with me when I was bald. You are my love and my best friend. I can’t thank you enough for all that you did for us.

As for the future…I don’t know what it will hold. Lord willing, I’ll continue to stay in remission. If not, there are some wonderful drugs already in clinical trials that will be available to me. But no matter what, it’s not over till it’s over!!!! I am a survivor!! – KJ

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