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Any Advice?

mare18mare
Posts: 2
Joined: Sep 2008

I received a clean bill of health on Monday after receiving chemo and lumbar puntures for Non-Hodgkins lymphoma. I had a malignant tumor behind my tongue. I just finished my chemo in August - 6 treatments and 6 lumbar punctures. I am very blessed to be in remission. However, I wake up everyday thinking is it going to come back. Every time my throat hurts I think the cancer is back.. I know this is normal, but is anyone else going through this. It seems to be consuming me everyday. Any advice? Thank you.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

mare18mare. Its a great thing when someone on here is in remission. Although many people don't like that word for many reasons. It seems the word almost brings the expectation of future cancer into the picture. That alone is enough to cause anxiety when you have just finished cancer treatments. The short answer to your question is talk to your Oncologist about anxiety drugs as many of us have used them. Or group counseling, therapy ect and your Oncologist proubly would know where to find that. I took anxiety drugs for 3 months until my brain got back up to speed. The longer answer is this. We wake up and look at the bedroom ceiling and do a body inventory before we even get out of bed. Anything that is not what we feel is normal sets us up for a bad day mentally. Its learning to get your foot on the floor and give things a few hours to sort out that takes time. A swollen lymph gland or sore throat that was once a sign of a cold is now a sign of cancer to us. So I had to learn to give things time to sort out or I was not living my life. Coping skills will come with time. Some things like cancer checks or hospital visits will bring back anxiety and we will talk to people on here for support. A support structure with caring people is a great thing and I am sure that is why this web sight is here. But also, when you feel something is not right and it is not getting better don't be afraid to call your physician or oncologist. Your immune system has taken a beating. When I had symptoms for a few days it usually turned out to be an ear or sinus infection. We never quit learning on this subject. God Bless You and I pray you have a full and happy life. Slickwilly

Racht's picture
Racht
Posts: 40
Joined: Nov 2005

Hi there.
I am sorry you are dealing with such profound fear and dread. I think part of the reason we patients/survivors go through that "what if" cycle you describe is because we were so blindsided with shock at the outset, that nothing could be worse than having our lives be allowed to spin that far out of our control again. And having come that close to death, having heard those dreadful words once, heightens our awareness to all things health related - even when it's not our own health! (its amazing how many conversations I overhear that discuss someone's health, an upcoming dr's appt. etc., have you found this too?)
I think rather than focus on "keeping cancer from coming back" what has helped me is to focus on bringing my body closer to health so IT can fight those cancer cells as it was designed to do by its Creator. I busied myself with learning many ways that I could be proactive (versus reactive) about my health and so now when I wake up every day I think "what can I do to promote health" versus, what if I ever hear those dreadful words again? This does 2 things, it helps me feel empowered, rather than victimized and it occupies my mind with positive energy versus negativity. There are a lot of inspiring stories out there of people like me that started just being more conscious of what they put in their mouth every day (food!). It's amazing how huge an impact a small change like that can make! May I recommend a book to you that has made a huge difference in my life? It is called The China Study. it's fantastic! Fear in itself is a toxicity that can destroy your health so don't let it take over. God loves you and he turn even this into something beautiful. His perfect love casts out fear. feel free and visit my website or email me directly. http://web.me.com/rmt0912

sandybe
Posts: 40
Joined: Aug 2008

You are right, it is difficult to get cancer out of your thoughts. I don't know if it will ever leave. I have Hodgkins Lymphoma and was diagnosed 2 years ago. When I finished treatment the first time and got the clean bill of health I still did not feel secure. Sure enough 8 months after finishing treatment for the first time, I did hear those dreaded words again. The cancer was back! The whirlwind started all over again. This time though was much different. I still do not know if the cancer is gone this time or not, but have decided to move on. I live with many of the side effects of the treatment, but don't look back, only forward. I don't want to waste my days thinking of what could happen, instead I've been able to move forward and just have normalcy. I would hate to look back one day and see all of the time that I wasted in the "what if" world. Life does go on, make the best of it. Do things that you might not have done before, and stop and smell the flowers. Make the best of your time, and enjoy those around you. Don't let cancer rule your life.

gagirl08
Posts: 15
Joined: Mar 2008

I have been in remission a yr and yes, I think most of us often wonder if or when the big C will return. It is a club no one joins willingly. However I agree that the best way to cope is not to be in denial about this disease but to "focus" on the good things we still have in life. (loved ones, good docs and compassionate nurses, friends that are willing to listen or help,and new medicines and treatments being researched every day etc). To me cancer is like my body was raped but I decided not to think on it each day and instead dwell on enjoying each moment as much as I can and being a little easier on myself ... doing things I love to do, enjoying talks and laughing with friends, taking time to make sure I really thank others and tell them how important they have been to me..and LOOKING for the blessings that are always there if we take the time to see them. Cancer took my "good health" (not to mention my hair!) but I sure don't want it to take my joy! (I wish you could have seen me at chemo with my bald head last Dec wearing my sequined Santa hat! )

spanky
Posts: 4
Joined: Jul 2003

I have been in remission for 7 years (actually, I say survivor now) and even at this point it's hard when I have a small ailment. I always think "what's wrong". As long as you are tune to your body and listen to it, try to follow natural remedies. Eat healthy and exercise, check your "lumps" regularly, make sure they are all the right size and in the right spots. Most of all, keep yourself educated.
Keep whatever positive reinforcements you need at all times around you.

Gaz's picture
Gaz
Posts: 22
Joined: Oct 2008

I was diagnosed with Stage 4 NHL on Feb. 11 2007. Ironically, my wife is an RN and was director of Hospice Nursing. I ignored signs for many months - fatigue, abdominal pain, throwing up, incessant coughing. My wife, knowing something was wrong, dragged me against my wishes to the ER. She saved my life. The cancer had spread to my lungs, liver, spleen, lymph nodes and stomach. The doctors tried a liver biopsy, but it didn't work. They gave me a choice of another, but I opted for surgery - time was wasting. When it was confirmed that I had cancer they told me treatments would start in 6 weeks. I negotiated them down to two. They told me that they would do a Pet Scan at the beginning and the end of the treatment. I told them they would also do one in the middle - in case we needed to change direction. They offered to have my treatments done at the local hospital; I told them that I would drive the 90 minutes to their office. If there was going to be a problem, I wanted to be right outside their door. Fatigue and constipation became very bad and they decided to admit me. I told them that I wasn't coming out until they got me somewhat "normal" (I received 4 units of blood). I was determined not to be a revolving door. Anyway, I finished my last treatment on June 13-14 (my birthday) and ran the Denver 1/2 marathon on October 14th, 2007. I was slow, but I was not going to be beaten. Stand. Always stand.

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Gaz,

I must applaud you on your determination to survive. Many patients don't realize that we have the right to question and tell the doctors when we do not agree with the plans set forth. It was so great of you to inform the doctors where you wanted to have your treatments. It was equally important to express your request to have a scan in the middle of your treatment.....double bravo to you. I too have this relationship with my dr. Before joining my support group, I had no idea I had the right to disagree or tell the dr "no" or to express my concerns and even postpone treatments if my body says no. So, again, I must applaud you on placing your experience in print. I am sure it will help someone to take a stand and take charge of his/her condition.

And congrats to you on the 1/2 marathon!

Gaz's picture
Gaz
Posts: 22
Joined: Oct 2008

Thanks "winthefight". I love the name!!

There's a fine line between arrogance and confidence and I hope that I wasn't the former. I only tried to share what you captured so eloquently - take charge of your condition. I was respectful of my medical team, sought their advice, but at the end of the day - I made the decision. I felt it was my responsibility and in many cases, I felt the medical staff was relieved to know that I was taking the pressure off of them for once. I only have about a 30% chance of living beyond 5 years. I'm not worried because it's better odds than a Lottery ticket. I'm taking each day positively and enjoying every moment. I appreciate the feedback and wish you all the best.

Cheers!!

spanky
Posts: 4
Joined: Jul 2003

Hey Gaz....never feel you are arrogant. I think we have a right. Only you know your body and know what is right. I love how you said take charge. You have to educate yourself on your condition and make decisions that are right for you. No matter how much time we have on this Earth (and that goes for all), we have to make it count. I love your positiveness. By the way, I am a stage 4B NHL survivor diagnosed in July 2000.

jessie37
Posts: 2
Joined: Nov 2008

It is so good to see someone who beat this cancer. I am 37 years old and also ignored the signs of pain in my right hip for several years. I had an MRI and since October 29th my life has been turned upside down. It is in 2 spots of my bone and 1 spot in my bone marrow. I just started chemo last week, and had a reaction to that nasty rutixan...which I have been reading some nasty things on that.
I have yet 2 experience the hair loss. Which being a woman will almost as difficult as the diagnosis itself. I am a mother of a 5 and 8 year old, so thank you for the inspiration. Even though I have a very supportive husband, I am treated very differenttly from people and I have to to pick myself up and figure out this is not a bad dream, and fight with everything I have.
Please tell me what kind of treatments you had
Thanks for sharing

mare18mare
Posts: 2
Joined: Sep 2008

Dear Jessie:

I received 6 R-Chop chemotherapys and 6 lumbar spinal taps. Since the cancer was on te back of my tongue I was required to get these lumbar taps. I went through the chemos well and never missed a day of work except for my treatments. You must have a positive outlook. I too walked around in a daze and fought. I just went for my 1st visit with my Oncologist on November 10th and so far I am still in remission. You will loose your hair after your 2nd chemo. Yes, this is quite traumatizing for a woman. Get a prescription for a wig and try to get one as close to your look now as possible. There are many people out there that don't even know I have cancer. I cried when my friend shaved my head and now only after 2 months I am giving up the wig. My hair is coming in better than ever. It is something you will never forget and I still wake up every morning thinking I can't believe I went through this. Join a support group or speak to someone that has or had cancer. Talking will make you feel better. A sister, brother etc. anyone who will listen. If you like I am here too and will answer any questions you may have. Hang in there. Do what you have to do and everything will work out. It takes time and patience. You will have good days and bad days. Be strong for your children. God bless you. By the way I am 57 years old so you definitely have age on your side.

scrummy3
Posts: 10
Joined: Oct 2008

Jessie,

Got the news I probably had nHL on my daughter's 11th birthday in 2004, four days after my own 42nd birthday, and 8 months after a brother died of AML. So, I guess there will always be "markers" in this process - dates of appts, tests, treatments, etc. will seem to interfere with other important events. Do what you can to not let them take away any more control from your life.

It took four weeks from initial diagnosis for the tests/biopsies to confirm type, fitness for treatment, and to start treatment. As sick as I was, I'd rate 9/16/2004 as one of the best and most amazing days of my life - my first treatment. It actually gave me back part of my life. The time between diagnosis and treatment was pretty miserable: daily fevers of well over 102, headaches, night sweats, blood counts that were tanking, and the familiar confusion/fear/anxiety. After the first treatment, I was able to sleep peacefully and woke with no symptoms the next day.

In short, if I had to have this disease I am so glad I had it at 42 instead of 22 or 62 - more perspective than in my youth and perhaps more stamina than at an older age. Although, I know some 60 year olds who would kick my butt.

I had 6 treatments of CHOP-R and two to "grow on", for a total of 8 in six months. Not a bad ride at all, although the Rituxin did a number on me the first time - low fever, difficulty breathing, rigors, and the coup de gras, nausea. Quite a show for my mates in the infusion room. I was told at the time it would not do the same thing on successive treatments and it did not. The next 7 seven infusions went off fine. Like Gaz. I actually looked forward to my treatments - felt safe and the nurses were just a blast to hang with.

In terms of kids, my daughter 11 and my son 13 at the time, knew what was going on and after losing an uncle 8 months earlier, we were very concerned about how it would affect them. We coordinated with their counselors at school, had some help from neighbors, and tried to keep them away from scary, but well-meaning people who wanted to spend way too much time making them dwell on it. Denial is a bad place to spend time, but so is "what-if" - getting too far ahead of your treament or your lie.

Best advice I got since then is to let your children know they can talk to you about this and to answer your childrens' questions before they answer them on their own. The concern is that they will find scarier and often wrong answers on their own absent your guidance. They may be afraid to ask or discuss things with you out of fear or anxiety. Very understandable. This strategy seemed to work for us and again, we had some neighbors who understood this as well.

I'll bring this ramble to a close. Some quick shots:

- Keep talking with your docs and nurses about things to make you more comfortable. Lots of ways to minimize effects of treatment but the providers don't always think to tell you or ask, so yask them yourself.

- Plan activities, rest up, and budget your time so you can enjoy the things you want.

- Try not to be a shut-in. I had to avoid people be because of low white counts for a couple of weeks, but I went to kids soccer games or any outdoor event and just stayed away from the field. Once the counts got better, and when my stamina would allow, I went for long walks, drives, and any place I could. It can be invigorating.

- Recurring theme - taking control. You lose so much control when this happens, but talking with your doctor, your kids, planning activities, working with other folks - they all help you take back some control.

Hope this finds you feeling better. Would love to hear more about how you are doing.

---
John

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Jessie,

I was diagnosed 4 days before my 42nd birthday. I was very lucky and had no reaction to the Rituxan, I had 6 rounds of CVP&R and about a year of Rituxan maintenance every other month.

As far as hair loss, I thought my entire identity revolved around my hair....what I found out was such a tremendous surprise. I loved being bald! I still have very short hair and love it. I cannot stand having hair touch my neck anymore. When I went back to work my hair was maybe about 1/4" long and it was so cotton-picking hot that I couldn't stand wearing a scarf to work anymore and decided that I was the way I was and that was ok. It was very thin and I had a big sign at my desk that said HAIR IS HIGHLY OVERRATED! :)

People didn't know how to talk to me. I laughed and said please talk normal, make me laugh, make me smile. Treatment stank, I hurt and was exhausted, but life is great now. I did relapse once, went for rads and beat this monster. I am still in remission today and very thankful for every day.

Take care, and very good luck with your treatments!

sandybe
Posts: 40
Joined: Aug 2008

Love your post dixiegirl. How long has it been since your relapse?

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I actually relapsed very soon after treatment...within 3 months. This was in December 06 when I had the scan showing a small spot. We just continued with the Rituxan maintenance until August 07 and was watching it. We finally decided to do the radiation in August and did 17 rads and I have been cancer free since Sept. 07.

spanky
Posts: 4
Joined: Jul 2003

I was also 37 when I was diagnosed. I went through CHOP Chemotherapy, 8 rounds. I couldn't do radiation, because it was throughout my whole lymphatic system. After 6, my oncologist told me I could have 2 more, but didn't necessarily need them, but I had them load me up anyway. I lost my hair within a week after the first treatment. Then my husband showed his support by shaving his off too. He came to every treatment with me, we played cards as I listened to my favorite music. Should I mention that he held nothing back and beat me in every game of gin? My CT Scans have been clean since Feb 2001 (Thank God). Keep those children in mind, they need you. I have 4 and that was one of the things that kept me in a positive state of mind. I wish you the best...livestrong!

spanky
Posts: 4
Joined: Jul 2003

Just wanted to tell you one more thing (if you don't already know) The Lymphoma Research Foundation has a great site - www.lymphoma.org They have newsletters you can subscribe to; online information you can research that is specific to your needs. I found it to be a fountain of information in my time of need. I hope it will help you! They have chapters all over, you may be able to find one that's near you.
I hope this helps.........!!!!

sandybe
Posts: 40
Joined: Aug 2008

As I was reading the posts from the two of you, it was like dejavu. I think 37 must be a magic age for Lymphoma. I was also 37 when diagnosed and my children were 6 and 8, much like you Jessie. All the best in your treatments, and I hope all goes well. I know my children have helped me focus to get through this. My first diagnosis was 2 years ago this Christmas, and that is something my children will never forget. When they think of Christmas, they think of mommy getting sick, and Santa of course. Have a good Holiday Season and good luck with the hair thing. It's been a little over a year since my chemo has been finished and you would never believe how much your hair will grow in one year. Although I didn't really complain when I didn't have to do my hair in the morning, it made showering much quicker and putting on makeup quicker too because I had no eyelashes to put mascara on. I put my wig or bandana on and off I went.

Gaz's picture
Gaz
Posts: 22
Joined: Oct 2008

Reading the last few postings so impressed me. All of you are standard bearers for how to stand up and fight back. It's a high mountain to climb for anyone, but when you have children and a woman I can only imagine how arduous it must be. I'm 52 and now a year and a half since my last treatment. I found myself, oddly enough, actually looking forward to the treatments as I believed they were getting me ever closer to being in remission. While taking the treatments we were preparing for our daughter's marriage. I beamed with delight the day I walked her down the aisle. I pray things go well for you Jessie. Take a day at a time. Stay positive. Stand.

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