Friday happened to have been that time of year again. The time when I have to see my oncologist for my yearly check-up and blood draw. I know I should be thankful that I don’t have to see him every 3, 4 and 6 months like I use to but it’s still nerve-racking to do it once a year.

Being a survivor is different from going through treatment. When you go through treatment you have something to focus on, fight and conquer. On this side of treatment you have nothing physically to fight for. When the battle is over you are left feeling like people expect you to move on and enjoy your life. I have enjoyed life to the fullest because I’ve been given the opportunity to live it. That in itself is the most amazing thing about my cancer journey. But it doesn’t make being a survivor easy.

Cancer will forever be branded upon you in some way that has changed you. Good change is that you have a life to live. You can watch your children grow up. You can grow old with your spouse. You have a rare opportunity to be a source of support to others who are dealing with cancer. New and amazing doors are open to you in a way you never would have imagined.

Other changes that don’t feel like blessings are the fact that cancer is always lurking in the back ground. No bump, headache, skin rash or whatever is just that. It almost always could be . . .   My cancer is not curable and the chances of it coming back are higher than not. My oncologist once reminded me of this fact but also told me that it’s a miracle that it hasn’t returned yet. I’ll take that miracle thank you! Secondary cancers are also a concern and I’ve had some scares over the years with different things. Thankfully, they’ve all turned out to be nothing.

Looking into the future is like looking into the unknown. Before cancer I assumed I’d grow old with Eric and hold my grandchildren. Now the little nagging feeling way back in my mind tells me that there is a possibility of that not happening. It’s hard not to sit and worry about the cancer coming back. There is nothing physically to battle because the battle is now in your mind. And that battle, my friend, is often harder to fight than the battle of treatment.

I may not always be happy that cancer entered my life. And sometimes I still do take life for granted. Don’t gasp in shock now . . . . I’m just being honest that the shock of the initial journey has long worn off and I’ve moved on. I’m sure I’m not the first survivor to think this. I’ve moved on but this once a year reminder keeps me rooted in the year 2000 when life changed forever. Sometimes I have a pity party for myself, get upset that I’ve got to drag cancer behind me and feel mad when I hear about people loosing their battle with it.

I may have to forever be linked to cancer but I don’t have to let it rule my life. When I first started going through treatment I decided that no matter what or if I lost my life that cancer was no longer going to rule over me. It may be invading my body but it didn’t have to invade my soul. The first thing I did was shave off all my hair before it all fell out. It was mine to take and not the cancer’s. I can continue to not allow cancer to rule my life by not allowing it to make me live in fear of it. I can’t control the fact that it could come back or not but I can control my anxiety and fears that it will.

Again, cancer has no control over me! I know this to be true because I believe with all my heart that God is in control of me. Did He give me cancer? I don’t know. But what I do know is that without cancer I wouldn’t be a changed person. He may not have prevented me from getting cancer but He did guide me through it and never left my side. I know this might be hard for some survivors to hear especially if you don’t believe in God. I know from past experience on the Stop Non-Hodgkin’s Lymphoma Message Board I frequented while going through treatment that many blamed God for what they and loved ones were going through. And because of it they didn’t want to have anything to do with Him. I know this because when I expressed the way I was dealing with my cancer through my faith that I got blasted. Told not to talk about faith on the board. It hurt to hear this but I understood. But the fact remains, I would be a fearful, angry and very bitter person as a result of my cancer journey had I not gone through it with Jesus at my side.

My cancer life verse is one that has been overused since I claimed it as my own 11 years ago. But I still cling to it and have added two other verses that follow it that often get overlooked.

“For I know the plans that I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you a hope and a future. Then you will call on Me and come and pray to Me, and I will listen to you. You will seek Me and find Me when you seek Me with all your heart.” Jeremiah 29:11-13

I stand upon my faith and God’s promises because I know He has a plan for me. But I also know that it is not my place to tell Him how that plan should be lived out. Or that my life should be free of pain and suffering. He gives me a hope and a future regardless of my circumstances because I know He will guide me through them. And through it I grow and gain experience that can be used to stand alongside someone else. I love the last part of the above passage. It tells me that if I call upon and seek the Lord that He will be here for me.

I can’t stop the disease on a global scale but I can do something. I can make sure that I continue to move forward, continue to be a source of support and remember the many blessings God has brought into my life since that time. I will continue to say that cancer is a blessing to me. Without it I would have continued to be the person I was before it entered my life. I didn’t really care for that person. Fear ruled and reigned in her life and caused her to hide from everything. The person I am today is the result of my experience with cancer. It made me realize who I really was in God and to be more comfortable with being me. That, my friend, is a blessing.

Oh about my appointment . . . . it went well, blood work-up perfect and to top it off I lost 11 pounds since last year! Now I can go on and let cancer slide to the back of my mind and enjoy the year to come.

Thank you to all who continue to support me through my survivorship. I have no idea if and when I will have to fight the beast again but I know that I have been blessed to have enjoyed these past 10 years in good health. The money raised for Relay for Life and other organizations like The Leukemia Lymphoma Society have helped to contribute raising money to fund research to give us a cure.

Our friends, Branda & Theresa with Katelyn & Emily

Survivors opening the event

Let the walking begin!

Cheering the survivors on

My friend Branda has been a Relay for Life participant for many years

After being diagnosed with Lymphoma I began to seek out local support groups. Sadly, each one was filled with older people and meet at a time when I had no one to watch my 4 month old and 3 year old. One facilitator said she’d gladly welcome me but that I may not find anyone to relate to because of my age. I was discouraged at the thought of facing this monster alone. I really wasn’t alone because I had a great support team in my husband, children, family and friends. But they didn’t have cancer so they couldn’t understand how I truly felt.

I had a good friend, Julia, post my story on a parenting website she frequented. From there I got an e-mail from Jill. Jill’s husband, Dave, had recently been diagnosed with Lymphoma and she wanted to direct me to a message board that was dedicated to the needs of patients, caregivers and families dealing with Non-Hodgkin’s Lymphoma (NHL). I was deeply touched by Julia for taking the time to post my story and Jill for reaching out to a total stranger. But because of their compassion for me I was directed to a place where I no longer felt alone.

The Stop NHL Message Board was created by a wonderful women, Trudi. Here is what  the dedication to Trudi says from the message board, “Trudi’s courage and conviction to help her husband Bruce battle his NHL because a source of will and determination to many battling this disease and to those that care for, and love them. She founded this board some years after Bruce was diagnosed in 1986. Ironically, in December 2006 Trudi was diagnosed with Non-Small Cell Lung Cancer. Sadly, after a short but courageous battle of her own, we lost Trudi on April 16, 2007. Bruce continues to do well. It was Trudi’s courage and conviction that made this board persevere and, in her memory, the reason you will always find a shoulder to lean on.”

I found the support I needed. I found the love and security I needed. I found answers to the tough questions I was struggling with. I found a place where I could go to any time of the day and have someone reach out to me through my posts.

Trudi was truly and inspiration. Her love and dedication to Bruce was amazing and encouraging. She was the Mama that wrapped her arms around each one of us. Loosing her took the wind out of us all and has left ripples through the message board that has not fully recovered from her loss.

As I read the dedication again I am saddened by the last sentence, “It was Trudi’s courage and conviction that made this board persevere and, in her memory, the reason you will always find a shoulder to lean on.” I’m saddened by this because the message board is often silent. Newbies come seeking support and aren’t getting the mega support that I received. Many of the old timers have been silent for whatever reason. I often think, “What would Trudi do?” I think Trudi would double her efforts to reach out through the web to people all over the world.

I think of why I haven’t been active like I use to be. The answer: It has been 10 years since I was diagnosed and treated. In all that time I have been blessed not to have to deal with that particular beast again. In some ways I feel guilty because of it. I feel like I don’t have anything to give to someone going through the thick of it when I’ve enjoyed every bit of my cancer/treatment free life. I still go through the stresses that us survivors face – the unknown of relapse, secondary cancers and the constant reminders through yearly oncology appointments that it’s never over.

After all these years I finally decided to change my Lymphoma website into a blog. It’s not perfect and not as nice as what my wonderful husband created for me many years ago. But this way I can be more involved in updating it and maybe posting how I feel as a survivor.

What I really want to do is reach out to those who need the support that I needed when I was the newbie freaked out of my mind and wanting support. If you or anyone you know is suffering from Non-Hodgkin’s Lymphoma I have a place for you. Drop by the Stop NHL Message Board and post your story. As for the rest of oldies . . . . stop by the message board more often. When you see a Newbie seeking support respond and let them know they aren’t alone.

Krista Jones 4.29.10

Krista Jones

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

This journal only covers from the first day of treatment through the second treatment of CHOP. I wish I had written more but I didn’t.

Wednesday, October 18, 2000

It’s the morning of my first treatment. Eric took the day off to be with me. They say it’s going to take 6 hours to administer the Rituxan. Mom and Dad are going to watch the girls for us. Emily is having some separation anxiety and Katie is having anxiety over my health problems. It breaks my heart to see them go through this.

The treatment took longer then they expected due to my reaction to the drug. We arrived at the clinic at 9:30 a.m. They took my blood and hooked me up to an IV. After pumping me full for Benadryl they started the Rituxan. I hated the way the Benadryl made me feel…all dead weight.

I didn’t feel any different after being given the Rituxan. After a couple of hours I did start to break out in hives and ran a fever. I had to be taken off of the Rituxan and given more of the Benadryl before they started the drug up again at a slower drip. I was dead tired from being there all day. Both Mom and Eric took turns visiting me which made the day go a little better.

Before I left I talked to another nurse and she told me that they have such wonderful drugs to help with the side effects that she thought that I would have an easier time with the chemo then I thought I would. Good to know. I’m freaking out.

Thursday, October 19, 2000

My night was so horrible. I had to take more Benadryl to help with the side effects and that kept me up all night. GERR!!!! Eric had to stay home with me since I couldn’t take care of the kids. I feel so helpless. I’m OK, yet I can’t seem to get myself up most of the time. What’s going to happen when I start the chemo?

I’m so fearful of it all! I cried most of the evening at the thought of chemo. What if it makes me so sick that I can’t deal with life? What if I get sicker because of it? What if I die from it? Will it hurt as they inject it into me? I have so many questions yet how do I get them answered? I know the Lord is with me but I still sometimes feel all alone. Will he get me through this? I feel like I’m walking into a black hole with no light at the end of it to guide me.

Friday, October 20, 2000

This morning I got my pick line in. I had to go to Steven’s Hospital with Mom. I’m so glad she came with me because it was horrible! We had to go up into the new part of the hospital to get this procedure done. I saw the area where Eric was told I had cancer. I think he was siting there having breakfast. Poor guy. I wish someone would have been with him. Then again, we didn’t think it was anything.

The pick nurse was really nice. She had trouble finding a good vein. I guess I have bad veins. We found one on the inside of my upper left arm. Then, she had trouble getting it in because I had spastic veins and then she had trouble getting it across my shoulder. After a long time she finally got it in the right place which the X-Ray showed to be true. It hurts and I hate having it in. YUCK, something is inside of me!

Tonight Sheila came over and chopped my hair off. It looks OK but I miss my longer hair. I cried over this. I guess I had to mourn the loss of my hair or something. Why is this happening to me. Will I be embarrassed to go out in public?

Saturday, October 21, 2000

Today Travis, Susie and Callan are going to come to the Craven Farm’s pumpkin patch with us and Katie’s Preschool. I had to go into the treatment room to get my pick line looked at and redressed. Oooo, it kind of stung and the saline solution that they flush it out with made my mouth taste funny.

The kids had so much fun at the pumpkin patch. We played in all the stuff there and looked at the animals. Katie picked out this cute little pumpkin for herself and a white gourd for Emily. We got a bigger one to carve. She wants to carve Jessie from “Toy Story 2″ on it.

I felt like all my energy is drained from me today. I had to take a nap in order to get out of the funk. I think I’m getting Eric’s cold…not good.

Sunday, October 22, 2000

I did get a cold. I hope it goes away before Wednesday. I wonder if I will have to put off chemo? All I did was lay around the house. Not a good day.

Monday, October 23, 2000

Today I had another treatment of Rituxan. It wasn’t as bad as the first time and only took 4 hours to administer. Dad came along with me and talked the whole time. Eric brought the kids in to see me which made my day. Katie was able to see me hooked up to the IV but didn’t seem to care one way or another.

I meet another cancer patient who was on her 2nd round of chemo. She said that I was the only other person her age that she’s seen in the clinic. She was nice. I wish I could have talked to her and her husband more, but the Benadryl was taking effect and I had to go sit down. She left before I could get back to her. Her name is Debbie and she told me she was going to pray for me.

The nurse said that they’ll give medicine for the nausea before they administer the chemo and then they’ll give me more for later on. She said that I would probably only be wiped out after the first round and wouldn’t get really sick until the 3rd round. Glad to know.

I feel pretty good after this morning. Just wiped out. Eric has been working like a little bee and is doing a great job. I hope he doesn’t burn out.

Wednesday, October 25, 2000

Today was my first treatment of CHOP. All went well in the morning. They had us wait for about 45 mins. to get my blood work up papers. I was really nervous about watching the stuff go into my body. Here I’ve spent 30 years keeping chemicals out of my body and now I have to put them into my body in order to save me! Afterwards Eric and I went out to eat and then to find a hat. By the time I got home I was nauseated. The meds. didn’t work. After taking more anti-nausea stuff I felt worse. I finally threw-up that night and felt better. After calling Dr. Ward I found out that I took the wrong anti-nausea med too soon and it made it worse. Great.

Well, I’m suppose to take two pills with food yet I can’t seem to eat anything. This is such a bummer. I wish it was all over and I can feel better. Today is Emily’s 7 month b-day. I can’t believe she’s that old already.

Thursday, October 26, 2000

I’m still feeling pretty bad. I was able to get a different anti-nausea med. that actually works and I was able to eat tonight. I think I’ve slept for 2 days straight. I can’t seem to not sleep. This is terrible. Tonight I found a message board to get some support. The people on it are wonderful. They don’t care that I can’t give any info and just let me vent my frustrations. I have been receiving a lot of support though so many people that Julia hooked me up with. It’s so nice since I can’t find a support group locally that will fit my needs.Gotta get some sleep.

Friday, October 27, 2000

I feel so much better today. Still tired but hanging in there. I’ve been able to eat and drink a lot. Mom and Dad took the kids on a bus ride to Northgate. I spent the morning talking on the phone to Andrea and Cindy. Felt good to talk to them. They’re doing well. I was also able to get some cross-stitching done before my fingers go wacky…if they do.

Julia and the kids came over and gave us some dinner. It was so nice of them to think of us. I think I freaked Joey out by my new haircut. It made me cry to see him so upset over seeing me. I love that kid and I know he likes me so I don’t want this to be a barrier. I’ll understand if it becomes one since he’s just a little guy.

After the kids came back Mom stayed and helped around the house. It was nice to have her around all day. I’m getting use to having company and get lonely without it. The girls have been angels which has helped. I hope I start to feel better.

Saturday, October 28, 2000

I woke up with the runs today and feel pretty bad. I thought I would get better but I’m not. I did get up and eat and did some housework which has helped. The kids are in bad moods and don’t want to do much of anything. Katie is watching Toy Story 2 and Emily is sitting in her entertainer. Will see how the rest of this day shapes up.

Tonight we took the girls out to the mall to pick up our family pictures. They turned out great! Can’t wait to share them with the family. I also got a nice jacket at Sears. Love it! We took Katie to Red Robin where she enjoyed herself. She kept on dancing to the music.

I’ve come down with the case of a mouth funk due to the chemo. The Doc. says that he’ll have to adjust the chemo next time. Eric is off getting me something to help this sour bitter feeling I get whenever I eat or drink. Will this ever end?

Sunday, October 29, 2000

Went to church today. I felt good in the morning but horrible by the time I got home. Took a 2 hr. nap which made me feel better. I can’t stand feeling this way. Eric has been a sweetheart by doing all that I can’t.

Monday – Wednesday, October 30 – November 1, 2000

These past couple of days have been great. I feel like my old self again. Had a lot of energy on the 31st. Took the girls to some outings for Halloween. What a blast!!!

Had my blood checked on Wednesday and all was well. The nurse said that I’m feeling the calm before the storm. Great.

Took my last pred. and am feeling better. It was kind of taking over my body making me agitated and all.

Thursday, November 2, 2000

OK, I’m hitting the wall. I felt so good for a while but now I’m weak. Eric took Katie to preschool and Dad will pick her up. He’ll be taking care of me until Eric comes home. I don’t know if I’m going to like this feeling! Hope it goes away soon. I do feel much better after getting up and eating. Maybe that was the key…yea right.

Well, the day went smoothly. Dad came to stay with me all day. The kids were great. Emily played for hours by herself and then took a 3 hr. nap. Katie took a long nap and has been good. Still feeling very weak but hanging in there. Mom is suppose to come over tomorrow to help clean the house.

Friday, November 3, 2000

Still am feeling weak but better. Mom came over and cleaned the house for us. She also made her stew which was yummy. Peggy V. came by for a suprise visit and stayed for about 2 hrs. It was fun to see her. I miss her a lot.

Saturday, November 4 – Wednesday, November 15, 2000

Well, the weeks have been going really well. I’m feeling like my old self. Still tired but hanging in there. The kids have been great. I was able to go to the MTO group and enjoy visiting with the ladies. On Wed. Nov. 8 I found out that the ringing in my years was an ear infection. Am taking meds that are working.

Eric cut my hair on Tuesday. It was the hardest thing to do. Couldn’t keep it any longer because it was falling out faster then I can type. We both cried and cried. Before he cut it he stopped and held me telling me how sorry he was that I had to go through this. He is such a wonderful person. I’m so blessed to have him in my life. Don’t know how he stand up to all this pressure of my illness. What a man.

Tomorrow (Thursday, Nov 16, 2000) will be another CHOP. I’m really nervous about it. Do I have to go through it again? AGG, this hurts!

Thursday, November 16, 2000

2nd CHOP down only 2 more to go. All went well. We talked to the onc. and he was able to figure out what meds would work for my nausea. It seemed to have worked better. Still ralphed all over twice and felt really bad. But, not as bad as the first time. He told us that I got a reaction like people got before they had meds. Hello, that would happen to me. Eric and Dad both took turns to help me out in treatment.

Friday, November 17, 2000

Am a little sick today but not that bad. Slept in all morning. Mom and Dad took Katie to see Noreen so we only had Emmie to take care of. Eric and I decided to take the rest of my hair off. I’m almost totally bald but the bald spot is getting bigger. It looks really good if you ask me. I’m glad we did it. The only thing I don’t like is how cold my head gets. I’m wearing a nice hat we got at Freddies at night to keep it warm. Eric showed me how to use a bandana. I think this will work out. Anyway, gotta try to get some sleep. I think my meds are keeping me up again. GERR.

Saturday – Sunday, November 18-19, 2000

Been feeling OK. Kind of tired but hanging in there. Glad this isn’t as bad as it can be.

Monday, November 20, 2000

Couldn’t sleep last night. Spent the night crying. I can’t help but ask God why this is happening to me. I don’t know if I can be as strong as He wants me to be. What does He want me to do? I feel burdened to witness to my friends. Carman told me her niece is in pretty bad shape. She’s only 15 and has Hodgkin’s, Stage 4 with it all over her body. Poor girl is taking chemo every day for 15 days. The Dr. says that if she makes it 6 months then she has a good chance of getting this. How can I be so sad about myself when there are other people who are far worse? I’ve just been feeling tired all day. Eric has been a dear and helped me. He shaved his hair for me. What a dear! — KJ

9 Months

2 Years

3 Years

4 Years

5 Years

Visiting Grandparents in Wisconsin - 1975

9 Years

7th Grade - 1982

Ballet Recital - 1986

My 1st Car the Silver Bullet - 1977 Honda Accord

Christmas Ball - 1987

Senior Picture - 1988

Prom - 1988

Ballet - 1988

1991

Where I met Eric at Ecola Bible School - 1991

Wedding Day - 1993

1995

Katelyn's Birth - 1997

Emily's Birth - 2000

2001

Pinning Eric at his Graduation - 2003

2004

At Jennifer's Wedding - 2004

2006

2009

2010

Seattle/Alaska Team

With teammates at the pasta dinner the night before the marathon.

Getting ready to walk!

A sea of runners & walkers

The starting line

And we're off!

Mile 12

Mile 22

Finish Line!

I walked in honor of my STOP NHL Message Board

Finisher's Medal

My hubby

Article from: Lymphoma Update Newsletter, Winter 2000, Volume 6 Number 4

While the initiation of treatment provides hope, it can also be a time of tremendous stress. Knowing what to expect and being able to prepare for the changes that will affect your life will help you gain some control and peace of mind at a time when you might be feeling anxious and overwhelmed. Below are some helpful points to consider prior to initiating treatment for your lymphoma.

Obtain information about your treatment. For some people, a lake of information about their treatment can cause fear and anxiety. Understanding the therapy and knowing what to expect may help to ease your worries and prepare others to help you through this treatment period. Establish and open and honest dialogue with your physician and nurse regarding what the prescribed treatment regimen is, how it works, what tests are involved and what side effects and complications may be associated with it. Asking questions as often as needed will help your doctors and nurses fully address your concerns. If the amount of information becomes overwhelming, ask a family member or friend to help you sort through it and to accompany you to advocate on your behalf during office or hospital visits.

Obtain information about possible side effects of treatment. Ask your physician or nurse about the probability of various side effects or complications of treatment and what medication is available before, during and after treatment to alleviate or lessen them. Also, ask about suggestions on how to manage and cope with potential side effects.

Talk to someone who has gone through it. Many patients find it extremely valuable to hear about the experiences of another patient who has been through the same treatment and who may have had similar concerns. Although each person is different and each response to therapy is unique, knowing someone who has successfully completed the same treatment regimen can be a source of great comfort. Contact LRFA to participate in “Cell-Mates,” the Foundation’s peer support program that matches patients based on type of lymphoma, treatment histories and similar interests to share experiences and offer emotional support and encouragement.

Know who will be on your treatment team. During the course of your treatment there may be several different medical personally administering your care. You might fin dit helpful to know ahead of time who these people will be and the role they will play in your treatment. Each member of your treatment team specializes in a particular aspect of your regimen and works closely together to give you the best medical care. Below is a list of possible treatment team specialists. Your team will depend on the type of therapy you will receive.

Medical Oncologist – A doctor who specializes in the causes, diagnosis and treatment of cancer.
Hematologist/Oncologist – A doctor who specializes in the causes, diagnosis and treatment of cancers of the blood and lymph system, such as lymphoma, leukemia and myeloma.
Radiation Oncologist – A doctor who specialized in treating and managing cancer with radiation.
Nuclear Medicine Physician – A doctor who specializes in interpreting and administrating diagnostic tests and therapy modalities that use radioactive materials.
Radiologist – A doctor trained in taking and interpreting X-ray and other high-energy photos of the inside of your body.
Pain Specialist – A doctor trained to evaluate the patient’s need for prescription pain medication and to order it.
Nurse – A trained medical professional who will coordinate the various components of your treatment, help you learn about your treatment and possible related side effects and assist you in managing those side effects. You may have one or more nurses trained in a particular area of care depending on your treatment, such as a chemotherapy nurse, a bone marrow transplant nurse, etc.
Pharmacist – A licensed professional trained to prepare and dispense prescription medication.
Nuclear Medicine Technologist – A trained professional who measures, prepares and administers radioactive materials in diagnosing and treating disease.
Radiation Technician – A trained professional who operates the equipment delivering the radiation.
X-ray Technician – A trained professional who operates the equipment that allows an X-ray photo to be taken.
Oncology Social Worker – A licensed professional who provides cancer-related social services, support and referrals to financial resources.

Have dental work performed before treatment begins. It is important to see you dentist for a complete checkup and to take care of any needed dental work prior to your lymphoma treatment. Your teeth should be in their best possible condition since treatments such as head and neck radiation can increase the likelihood of developing cavities in your teeth. Some of the side effects experienced during treatment, such as mouth sores and a decreased ability to fight off infection, can make it painful and undesirable for dental work to be performed during or soon after treatment. Additionally, dental work performed at this time should be avoided to prevent cuts in the mouth that can lead to infection.

Consider Fertility issues prior to beginning treatment. Lymphoma treatments consisting of chemotherapy and/or radiation can affects one’s ability to have children to the future. Consult with a specialist who can explain the effects of treatment on fertility and learn about your options on bank sperm or eggs for future use before starting therapy.

Take steps to cope with possible hair loss. While hair loss, or alopecia, is a temporary side effect of certain therapies, for some patients, losing one’s hair can be upsetting and stressful. If you particular treatment can cause hair loss, consider cutting your hair short to make future hair loss less noticeable. Purchasing a wig before you lose your air will make it easier to match your hair color to that of the wig.

Review medical insurance policies and consider related financial issues. Understanding the costs involved with your treatment and what your financial obligations will be can make it easier to plan to meet these obligations. Speak with your doctor or hospital staff about the costs associated with the different aspects of your treatment, such as lab tests, medications, hospital stays, etc. Find out which costs will be covered by your health insurance carrier, medicare, MediCal, or other resources available to you. Consider the financial impact of taking time off from work and discuss with your employer the possibility of flexible work arrangements.

There are organizations, programs and books that can help you learn about treatment-related financial issues, insurance issues, employment-based financial issues, federal and state assistance programs, disability income and other financial resources. Consult LRFA’s Lymphoma Resource Guide or contract the Foundation for more information.

Article from: Cure (magazine), Vol. 1 No. 1/Spring 2002

“YOU HAVE CANCER” were the worst three words that Arthur Foster, 65, had ever heard. Foster, of Harbor Springs, Michigan, was diagnosed with lung cancer in January 2000 and underwent the removal of two lobes of his right lung and three ribs. But the cancer came back in September 2000. With a prognosis of three to six months to live, Foster says, “I didn’t want to lie in bed and die. I wanted to find a clinical trial.”

Clinical trials provide the proof that a new treatment is better than the one being offered. They can offer a source of hope for cancer patients who have nowhere else to turn or those seeking potentially more beneficial or less toxic therapies. While most doctors offer the option of a clinical trial to patients, some do not. Finding a clinical trial can be a difficult task.

Resources For Clinical Trials

Cancer care can be found within driving distance for most Americans. Many oncology practices are involved in clinical trials, which might be based in one region but enroll patients in that trial from across the country through local oncology practices. In other words, a clinical trial sponsored by the National Cancer Institute (NCI) in Washington, D.C., could enroll patients from across the country if their local cancer treatment center chooses to take part. National organizations that sponsor or conduct clinical trials across the country include federal agencies, cooperative groups, cancer centers, and the pharmaceutical industry.

Travel is often a limiting factor for cancer patients, who may choose to stay close to the support of family and friends. For this reason, a search for a clinical trial should always begin at home with your own oncologist, who should not only be able to tell you if something is available locally, but also give you resources to see what may be available in other parts of the country.

The NCI and the American Cancer Society (ACS, 800-ACS-2345 or www.cancer.org) can put a patient in touch with local centers conducting trials. “Consider contacting cancer centers within your state or city,” suggests Clinical Trials Specialist Andrea Denicoff, RN, at the NCI in Bethesda, Maryland.

Depending on the type of cancer and where you live, you may have many options, some of which might involve travel. Local wellness centers can also offer assistance. Eileen Coan, MA, MLS, medical librarian at The Gathering Place (216-595-9546; coan@touchedbycancer.org,) in Beachwood, Ohio, is “happy to assist anyone in finding a clinical trial.”

The earlier a drug is in the clinical trial process, the fewer places it is available. This means those facing recurrent disease and who are not responding to the prescribed regimen might find only a few institutions where a new approach to their disease is in clinical trial.

“Clinical trials have so many requirements, they almost require the patient to live far away for long periods of time. The inconvenience is extremely difficult, and it is difficult to weigh the benefits for therapeutics that are unproven,” says Eric Rowinsky, MD, Director of Clinical Research at the Institute for Drug Development, Professor of Medicine in Oncology, The University of Texas Health Science Center, San Antonio, Texas. However, some patients are willing to travel.

“I enrolled in a trial and drove about 1,000 miles every three weeks to participate,” Foster explains. Foster enrolled in a trial at The Arthur G. James Cancer Hospital in Columbus, Ohio, which was testing the use of the drug suramin in combination with Taxol (paclitaxel) and Paraplatin (carboplatin) in non-small-cell lung cancer.

Most of the government-sponsored cancer clinical trials are conducted through the NCI. “A patient considering a cancer clinical trial can start by contacting the NCI’s Cancer Information Service (CIS) at 800-4- CANCER or through the NCI’s website, www.cancer.gov,” states Denicoff. There are 41 NCI-designated comprehensive cancer centers throughout the United States. A list, including contact information, is available at www.nci.nih.gov/cancercenters or by calling the CIS.

The NCI’s PhysicianÌs Data Query (PDQ) is one of the most comprehensive databases of cancer trials available on the internet at www.cancer.gov/search/clinical_trials. This website provides access to more than 1,800 open trials. Also, CIS representatives will do a customized search of the PDQ based on an individual patientÌs needs.

“The internet is the best source of clinical trials information,” says medical librarian Coan. Many websites contain databases of active clinical trials. No single resource, however, lists every cancer trial, and those sponsored directly by pharmaceutical companies are not listed in voluntary databases.

Contacting the pharmaceutical companies directly is often the best source of information on trials they may be conducting. Also, check individual cancer center websites for industry-sponsored trials.

Common Ground

Other cancer patients are often a valuable source of information. Contact local support groups through your hospital, physician, or ACS. Cancer centers and cancer websites often have chat rooms or email lists where patients can contact each other. Patients who are already enrolled in a trial are often willing to discuss their experiences with others.

However, Dr. Rowinsky cautions, “Patients often make recommendations based on their disease and experiences, which may represent misinformation to a patient who is making a decision.”

Before You Begin

Fully understand both the risks and benefits of each trial you are considering. Each trial has its own eligibility criteria and often has restrictions based on the type and stage of cancer, age, previous treatments received, and current health status. Discuss them with your doctor and/or contact the study coordinators conducting the studies you are considering. It is helpful to determine whether the trial is phase I, II, or III since each one has its advantages and disadvantages.

“Don’t be afraid to ask questions. I made lists of questions and took a tape recorder with me to my visits,” suggests Barbara Sharpe, 56, who enrolled in trial HMC 1197 within the Blood and Marrow Transplant Program at the Ireland Cancer Center of University Hospitals in Cleveland, Ohio, after being diagnosed with stage IV breast cancer three years ago. She received a blood stem cell transplant.

“I was terrified the first day I had chemotherapy, but it didn’t hurt. Two to three days later, though, I was really sick from the side effects. I was not a great candidate for chemotherapy; I got sick a lot and really tired. The newer meds for nausea helped a lot,” she recalls.

Some patients tolerate treatments well, however. “I never got sick. I did sleep a lot, but I never missed a day of work except to get treatments,” Foster says. Foster would typically drive to Columbus on a Thursday, have blood work drawn on Friday, receive treatments on Monday, drive home on Tuesday, and be back at work on Wednesday. “I still get numbness in my fingers and toes but my hair is back and I feel great,” he says.

Cost can be another consideration. A patient is often responsible for travel, lodging, or medical expenses not covered by insurance. Recently a law was passed that requires Medicare to cover routine costs associated with a clinical trial. Even if you don’t have medical insurance, help may be available. Sharpe had no assets or medical insurance when she enrolled in the trial. “The social workers in the Department of Human Services were wonderful. They managed my case and Medicaid covered the expenses,” Sharpe recalls. Information on financial assistance is provided by CIS.

While clinical trials do not guarantee a benefit above standard therapy, sometimes patients do benefit from the treatments. “Patients who have participated in clinical trials often feel they receive top-notch care whether they are in the standard therapy or experimental treatment arm. The physicians tend to be leaders in their field and have a dedicated research team,” says Denicoff.

Foster agrees, “The doctors and nurses don’t come any better. They treated me like I was their dad, and they didnÌt want to see me die.” Foster also gratefully acknowledges, “I would not be here today if I had not participated in a clinical trial. I would tell anybody in the world to go do it.”

What is a clinical trial?

Clinical trials are research studies in which people help doctors find ways to improve health and cancer care. Each study tries to answer scientific questions and to find better ways to prevent, diagnose, or treat cancer.

Why are there clinical trials?

A clinical trial is one of the final stages of a long and careful cancer research process. Studies are done with cancer patients to find out whether promising approaches to cancer prevention, diagnosis, and treatment are safe and effective.

What are the different types of clinical trials?

• Treatment trials test new treatment (like a new cancer drug, new approaches to surgery or radiation therapy, new combinations of treatments, or new methods such as gene therapy).
• Prevention trials test new approaches, such as medicines, vitamins, minerals, or other supplements that doctors believe may lower the risk of a certain type of cancer. These trials look for the best way to prevent cancer from coming back or a new cancer occurring in people who have already had cancer.
• Screening trials test the best way to find cancer, especially in its early stages.
• Quality-of-Life trials (also called Supportive Care trials) explore ways to improve comfort and quality of life for cancer patients.

What are the phases of clinical trials?

Most clinical research that involves the testing of a new drug progresses in an orderly series of steps, called phases. This allows researchers to ask and answer questions in a way that results in reliable information about the drug and protects the patients. Clinical trials are usually classified into one of three phases:

• Phase I Trials: These first studies in people evaluate how a new drug should be given (by mouth, injected into the blood, or injected into the muscle), how often, and at what dosage. A phase I trial usually enrolls only a small number of patients, sometimes as few as a dozen.
• Phase II Trials: A phase II trial continues to test the safety of the drug, and begins to evaluate how well the new drug works. Phase II studies usually focus on a particular type of cancer.
• Phase III Trials: These studies test a new drug, a new combination of drugs, or a new surgical procedure in comparison to the current standard. A participant will usually be assigned to the standard group or the new group at random (called randomization). Phase II trials often enroll large numbers of people and may be conducted at many doctors’ offices, clinics, and cancer centers nationwide.

Clinical Trial Websites

CancerGuide is maintained by Steve Dunn, a cancer survivor. The site features thoughtful cancer information as well as information about participation in clinical trials. Visit www.cancerguide.org

CancerWatch is a Boston-based publishing and information services company that provides an extensive list of IRB approved clinical trials on its website www.centerwatch.com or call 617-856-6900.

CbyerMedTrials was founded by a number of practicing oncologists in 1999 and maintains a website, the purpose of which is to educate patients. Resources include information about clinical trials, support groups, and other cancer resources. Visit www.cybermedtrials.org

OncoLink is sponsored by the University of Pennsylvania and contains extensive general cancer information and has partnered with EmergingMed.com to provide a free clinical trials matching service. Visit www.oncolink.unpenn.edu or www.emergingmed.com

The Pharmaceutical Research and Manufacturers of America (PhRMA) represents the country’s leading research-based pharmaceutical and biotechnology companies. They provide information about new drugs in development, a directory of prescription drugs, and patient assistance programs. Visit www.phrma.org or call 202-835-3400.