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To hell and back...

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

One year ago after many doctor visits, scans and biopsies I was diagnosis with Follicular Lymphoma.  I had a swollen lymph node in my neck.  Upon arriving home from a funeral I learned my Doctor was trying to reach me, he was in South Korea.  I knew it wasn't going to be good news.  It was 2:00 in the morning his time.  When he called there was static on the line so perhaps he didn't say I had cancer after all but he repeated himself and immediately I became a member in a new club that I didn't want to be in.  After more scans and bone marrow biopsy, I had a needle off the record moment...... stage IV incurable.  As a 48 years old mother of two, I instantly was relieved that this happened to me and not my children or my husband.  Then three weeks after my diagnosis the unbearable news came, my father was diagnosed with Mantel cell Lymphoma.  I had not shared this horror with my family or friends and only recently told my children.   My father and I were supposed to have treatment the same week.  I rescheduled it so I could be with him.  Still no one asked me about the scar on my neck?  I witnessed my fathers treatment which almost killed him, then I had to start my own.  I had to make excuses why I wasn't at the hospital on treatment days.  I also lied because I had to wear a mask because my blood count were so low and I was neutropenic.  I'm sharing my story because my family still doesn't know about me, I fear it would kill them.  I live with this everyday and so much more.  After a month of treatment and my father was stable, I left to recuperate in Italy for a trip I had planned a year earlier.  I didn't really think I was going to make it until the day before.  I had every intention of sending my family off with out me but the stress of my cancer, my fathers and hiding from everyone was more than I could bear.  I knew I needed to go in hopes to calm down enough for my treatment to work.  Since then there have been ups and downs.  As of today. I only told a few friends, my family is still protected and know nothing.  I'm not sure how living with this is going to be.  It's been one year.  I had great success with my treatment but fear what tomorrow may bring...

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Just read your post. I was diagnosed with follicular in Dec. Started chemo ealy Jan. The first person I told was my former boss at work. She happened to come into my cubicle just was I got the call (on my cell). She is also a breast cancer survivor. We talked for about 15 mins during which she calmed me down and talked about what to expect next. I also told my boss since he had to know why I was going to be taking so much time off. When I got home I told my husband right away. Since it was just before Christmas I didn't want to tell the kids until after a few other test results came back and after Christmas. About 4 days after Christmas I had to call each of my kids and my brother to let them know what was going on. Mu kids are all young adults. That is also when I let other family & friends know. The amount of support I have receivedfrom everyone has made everything a little easier to deal with. It has also provided many shoulders to lean on when I feel low. 

I am not going to argue why you should or should not tell your family. Consider this. You get through all of your treatments without any of your family suspecting anything is wrong. Dr runs test and informs you that they didn't work and you only have weeks to live. Now you have to tell your husband that you have a short period of time to put your life in order. How is he going to feel knowing that you have been fightint the disease for months and hiding it from him. Not allowing him to give his support. Having the suport of the people closest too you can relly do a lot to reduce stress and improve your overall attitude.

 

Decision is yours.

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

My husband knew right away and my children now know too.  I told them six months after.  I guess I wasn't clear enough because when I refered to my family I was meaning my mother, father, brothers, aunts, uncles, cousins etc... They don't know and most friends and neighbors don't also.  In protecting my mother and father and had to keep this, tight to the chest so to speak.  I am fortunate that I have a low burdon of this disease.

I would have loved caring support and would not wish my decision to keep this a secret on anyone.  Many times it was harder than having cancer itself.  I feel like I'm living in some twisted nightmere.  Recently I had horrific dreams of what you spoke of (treatment not working) and showing up to visit my father bald and in a wheelchair....

I have witnessed the blessings of support when caring for my father.  Seeing the family, friends, and neighbors rally around my father gave him a reason to fight like hell.  One year later, they're still there.  I have cried many times alone knowing I won't have that but hope that this personal hell of mine will save my father from added stress and grief.  I'm his only daughter.  Perhaps it's the timing being diagnosis three weeks from one another and both having lymphoma???  What I can say is my circle has opened up, few more do know.  I have a great friend who is like a sister to me, she's an oncologist and her husband is my oncologist.  They have been beyond incredible to me.  I don't have many who know but the ones I do, I greatly appreciate.

I'm not sure why things played out the way they have, I have been put on this journey for a reason and I just want to make God proud of me.  Not sure if this will make sense but it drives me forward.

Thank you for your wisdom, you're absolutely right and I wish things could have been different.

I really hope all is well for you, are you done with treatment?

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Thank you for taking the time to clarify. I was actually going to ask you how you managed to get through it all without telling your husband & kids. (Unless the kids were very little.) I do understand why you owuldn't tell your parents and those that know them. This way all of those people were able to be there to support your dad. That was very selfless of you. I am also glad to hear you weren't completely without support from people other than you husband & kids. On the positive side, your dad was getting a level of support from you that no one else could have given him because you really did know what he was going through. To be honest, I don't know that I could have done that if I were in the same situation. Althoug I will admit that when my mom got sick (age related) I did not tell her about some problems I was having at the time because I did  not want her to worry. I was able to tell others and they knew not to say anything to her. The problem I had resulted in a hysterectomy abour 6 months after she died. To this day I do not regret that decision but I was fortunate in that I was able to tell our friends and my brother. 

I am near the tail end of treatment. I saw my PCP early in Dec and complained of some very weird constipation in Nov. I have IBS so weird means it was regular IBS type attack constipation. She checked my abdomen and found a mass. I was told a couple of week later that it was likely cancer. At that point the people who knew about it was my husband, my boss and a co-worker who is a cancer suvivor and a friend. They could not say anything at work since my one daughter works for the same company. I got the actual diagnosis of Follicular right after Christmas. I'll never forget that I started letting those arond me know about it the Tuesday after Christmas. My kids are all adults but that didn't make it any easier. The one that through me was my brother. I think it hit him hard at first. I have 3 grandkids, 10 and under, who were told but really don't understand it all. They just know Grandma is sick and isn't as active as she once was.

My first chemo was Jan 13 and was Chop. Insurance hadn't approved the Rituxan yet. Jan 29th I ended up in the ER with what I thought was a really bad constipation condition and turned out to have a perforated bowel. Seems tumor had been leaning agaist the bowel long enough to create a few adhesions. The Chop managed to shrink the tumor enough it pulled apart from the bowel causing some holes. (Lucky me.) So my next treatment was was R-Chop on Feb 24. Since then everything has gone according to plan. May 19 is my 6th Chop treatment (5th Rituxan). So on June 9th I will have a treatment of just Rituxan to make it six R treatments. On May 19 I will be tlaking with my oncologist about what happens next.

CAT scan after 4th treatment showed tumor is about half it's original size and other spots gone. The hardest part has been the 100mg of Prednisone and the crash when I stop taking it. Lately I am also feeling tired even when I get a lot of sleep. I am anemic and take iron pills. Just realized part of the problem is I had quite eating beef back when the bowel surgery was done (hard to digest.) and never started eating it again so this last weekend I added beef back into my diet, in moderation.  I do still work. Each cycle starts with a day off (chemo day), 6 days of working from home and 9 days of working in the office. I work in a large IT dept in a large company so it is fairly easy to work from home. I am a little bit of a workaholic plus I feel it keeps me sane and able to focus on something besides the cancer. Being in IT my co-worker advised me to think of the whole cancer-thing as a project. Projects have stages, analysis, design, code/test and implementation. I though of the first 2 chemo treatments as the code/test stages, where they made sure I could take the drugs. 

For you I would stop thinking of your decision to not tell many around you of the cancer as a hell. It was a decision you had to make because you felt it was the only way your day would survive his cancer. If anything it was a sacrific you had to make. It sounds like you have determined that there are some people you can tell that you are sure they will not say anything to others. I wish you peace and good reports going forward. 

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Thank you!

I know I did the right thing, I receive confirmation everytime I'm in their company.  They just couldn't handle it.

I just have to deal with residual effects like, explaining why I'm not at certain events or having endured the pleasantries of a brother telling me I know nothing of lymphoma because his mother-in-law died of it 35 years ago (that was fun).  The worst was watching my father fail, we came very close to losing him.  That was hard enough but it was also difficult not to draw comparisons, I looked at him as if it was going to be me then I had to start treatment while he was still in medical cardiac ICU.  Everyday excluding treatment days, I was there in the hospital trying to comfort and support my father then wonder, am I going to get some infection too?  After all my white blood counts were lower than my fathers....  What bothered me most was listening to others complain about things that just didn't matter (ridiculous things) or my brothers talk about their ailments in front of my father.  Oddly they still do this and it makes me crazy.  After too many difficult days and seven months after diagnosis, I told my children.  I was doing well and wasn't going anywhere, I had to show them a different side of cancer.  Plus they had the right to know why I was having a bad moment from time to time.  It helped, I really thought I was going to lose my mind.  I had/have little energy, respiratory issues and still had to keep up a front.  Some things may sound hard but it wasn't all bad.

The best part, very few knew so I simply pretended not to have cancer.  This eased my mind and spirit which allowed me to refuel and be the warrior I am.  Keeping up the front, made me stronger.  I don't like giving in, perhaps it's similar to your desire to continue to work???

Sometimes I have to take it easy but not for long.  I just started to go back to the gym.  I'm a quarter of who I was before but don't care as long as I try.  This is really helping my fatigue.

What a road you have been on...

I have a friend who just wrote a book on IBS along with her sister.  It's all about what to eat and not...  It's called, The Everything guide to Low-FODMAP diet.  Dr. Barbra Bolen and Kathleen Bradley.  I like how you attacked this problem, it seems very logical.  I'm guessing but perhaps it helped in the emotional downside of having cancer? 

 

I'm glad you're responding well to the treatment and wish you great success.  Most of all no, more problems!  

Good luck on the 19th!

 

 

 

 

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I had to chuckle a little when I read about your brothers. My in-laws tend to be that way, older versus younger. The older ones tend to talk about things as if they are the only ones who know/experince some ting and forget out old the young ones are (there are 9 kids in the group). I am fortunate in that most of them now live in another state because 2 of the boys have died from cancer. When we first told them what I had I got a lot of "are you doing to die". Me, being the smart-*** I can be sometimes, always responded "we are all going to die". Of course the one whose mother-in-law died from lymphoma doesn't know about lymphoma either. He only know what she had told them. Of my 2 brother-in-laws who died one stayed with us through much if his care and trestment, right to the day he died of small cell lung cancer. I always felt that he probably was feeling pain or anxiety at times but held back from saying anything because he didn't want to worry us. I am more sure of that now than ever. Even though I have been able to tell everyone I find I don't tell them everything. I don't even tell my husband every ache & pain I feel. I'll just say I am tired. 

Work definitely allows my to pretend, for a while, that I don't have cancer. What helps more, my coworkers also treat me as if everything is normal. It took a little longer but I have managed to get my husband to stop waiting on my hand & foot. I still let him do certain things (like bring my laundry basket upstairs) and depend on him to do others (like make my protein shake every day). Then their are somewhat silly things, like serving myself for dinner that took a while to get him to stop making up my plate. It was nice being pampered like that but he tends to put too much food on the plate. 

We both have had to fight this beast in different ways but we've done it. I will admit I sometimes worry if the chemo is really doing what it should, even thought the CAT scan in April indicates it is. 

I looked up that book on IBS and it is availbel on Kindle. Definitely going to get it. I found out back in 1999 I had it when I ended up in the hospital because of bleeding. Was told it was because I had an E-coli infection along with an IBS attack They gave me some meds that didn't really help. Went through months is hell with getting attacks every few weeks. I had one coworker recommend garlic (he felt it was a cure all for everything) and another coworker who introduced my to camomille tea. I found the tea was good at calming my gut down and eventually found even hot tap water could help. Also figured out I that I was stressing over some family issues that i had not control over and had to let go of the situation. I went form counting ho wmany attacks I had a month to wondering when the last one was. I also figured out that soda and certain sweets/sugars could trigger an attack. I am not a big soda drinker but would have 2 or 3 cans a day when others would be drinking coffee. Stopped soda and started drinking more tea. Fortunately no attacks if OBS during this period of time. 

I think because I work in IT and deal with logic all of the time I approach life events the same way at times, sometimes after the emotional meltdown. Drives my family nuts. I love these discussion groups because we can talk about things we don't talk to our friends or family members about. Not only do the people on these groups understand but we can talk about stff without worrying our family. 

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I wish I found this group sooner.  I was diagnosised last April and wrote this post a year later.  Although I was in a weird spot.  Like we all are when we're diagnosised.  I was blindsided, scared and in shock.  I took a double blow when my mother never asked me about my biopsy (had three) then almost one month later figured out way.  She had too much on her plate, my dad.  Four months of tests, he was rapidly failing (doctors were out to lunch in his case) with no answers.  In one short month I had four biopsies, X-ray, ct scan, pet scan and flew out of state for a second opinion.  I have a scar across my neck, still no questions?  When I learned the dreaded news I needed to figure out my plan of attack.  I probadly would have told them as soon as I knew but I was pissed.  Then my fathers diagnosis.  Triple blow, everything was as it should be.  My father was very ill and there is only so much we could bear.  I wish I could have participated with people in the group, perhaps flying under the radar wouldn't have been so hard.

I became a warrior.  Steadfast and stronger than I ever thought possible.  Even declared war with the devil (not one of my brighter moments).  So many obstacles along the way, I simply shouted obscenities in my head and plowed through every last one of them.  Health problems, my dear cousin diagnosis with pancreatic cancer then my maid of honor with sarcoma.  No pity party for anyone, I just told them to buckle up and hang onto the warrior wagon because there is no accetable alternative, we're going to kick this nonsense where the sun don't shine, I would tell them.  Thank the good Lord that is exactly what we did.  They fed off my strength and I remained focused.  

Until a month or so before my first scan after treatment.

My mental strength was unshaken but my physical self was starting to crack.  I couldn't breath very well.  I had shortness of breath all the time.  The dreams I spoke of..... They were not so great.  I won't get into the details but I think in part it was what you had mentioned.  Is the treatment working even when you know it is.  I just started to see a cancer counselor, she told me it's one of the more difficult times.  Ending treatment and the first scan.  Horrid Nightmares made sense.  It is stressful, we never thought we would be in this club right?  I'm hoping the shortness of breath is from stress.  I did have two lung test and wore a heart rate monitor and all seems good.  

When I recieved the very good results from the scan, that was the first moment I actually felt similar to how I felt before I was diagnosed.  I hope and pray the same will be true for you.

I hope you like the book.  Kathleen is wonderful and has made me many treats from the book.  I don't have IBS but the recipes are good and healthy!

 

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

You did have a stuggle there. It is amazing how we handle situations we never thought we would have to face. And the Club. I had a coworker that was diagnosed with multiple Mylenoma about 14 years ago. He fought it for 11 eleven years. He would mention the Club ever so often and how people with cancer had almost an instant bond with each other. He thought it was great but also said it was a club that he hoped no one he knew would have to join. He was also a long time vegetarian and would pint out how it did not prevent him from getting cancer. Another line was that he was proof being a vegetarian did not mean a person would be thin. When I first got my diagnosis I thought of him and wished I could talk to him. Granted I know several survivors to talk to but he always had a humorous way of looking at things. I am trying to keep his type of positive attitude even though I know he had his low points too. It was because of him and the oncologists I talked to I looked for discussion boards to join. I ended up with 2, this one and one called Cancer Care. 

Your path from diagnosis to today had to be a rough one in all aways. Taking on a "persona" of a warrior was what helped you to get through it all. Every survivor I've know has said how the first few scans after the treatments ended being very scary. I am looking forward to the end of the treatments and start of maintenace but I am not sure about hiw I am going to be for those scans.

I look back and when all of this started I felt very strong. The perforated bowel was just a setback and I charged ahead once the chemo was restarted. I had a CAT scan after the 4th chemo and was happy when the dr told me the results and how she felt very happy with it. Then about the time of the 5th chemo I realized I was losing my sense of taste and I was tired more than I had been. After the 5th chemo both were more pronounced. I have never been sick for more than a couple of weeks except for a cold virus and this was starting to wear on me. So right now I am looking forward to the last R-Chop (next week Tues) but also wonder how much more the taste of foods is going to change and how much more I am going to be tired. Three weeks after that chemo I have the 6th Rituxan which doesn't seem to worry me. 

I am hoping that some of this down feeling is related to the pleural catheter I still have. Knowing it will be coming out has made me more aware of it being there. It has a large "bandage" type cover over the tubing which makes me feel like I am wounded. I also have not been able to take a eal shower, just sponge baths, with this thing there. Tomorrow it comes out and whatever bandage they put on the hole I am sure will be smalleer and, hopefully, only have to be there a few weeks. I can't wait to be able to take a real shower again and he last big Chemo (R-Chop) will help me to feel less like "blah". Work does keep me feeling better but when I get home I don't feel so good. I think once I get past these 2 milestones (catheter gone & last R-Chop) I need to rearrange stuff in our house back to how it was before all of this started. 

Sorry to go on this way but today is one of my not so good days. I think I am trying to not get too excited about tomorrow. Maybe a week from now I'll feel more like a warrior again too.

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Bad days are brutal and an unfortunate part of this journey.  I had many.  Somewhere along the way, I felt like I was drowning in a sea of bad days.  What seemed to work for me was mediation, recognizing and acknowledging whatever it was that was bothering me.  Sometimes a good cry, conversation, research......  I would allow what I needed (a flash flood of tears usually) then like a freak of nature I would yell at myself, in my mind to snap out of it!  Why, because I hated the way I felt.  Also I feared that stress would feed the monster I call cancer.  It's never easy.  Like your friend, I take a humorous look at this nonsense.  Perhaps to piss off the monster even more.

I hate that yesterday was not good for you.  I read it in your words, I could just tell.  Today be good to yourself, do something special and allow yourself to rest.  You're moving forward and that's Awesome!!!

My best and dearest friend is an oncologist (go figure).  On days of extreme fatigue she reminded me of what my body was doing, killing cancer and it's incredibly hard work and exhausting on the body.  She was right, it is.  I still fight fatigue but it is getting better.

It's hard for a warrior to be a warrior when she feels like a couch potato.  

I never had RCHOP, my father did.  His sense of taste did come back.  You are on a long haul and sound ready to jump off the wagon so to speak.  Who could blame you?  Soon this will be behind you.  I say, I'm quietly gaining ground.  Everyday moving forward.  Somewhere around the year mark, I was done.  Burnt and crispy.  My counselor told me that one day I will wake up and cancer will not be the first thing I think of.  I looked at her like she was out of her mind.  I wake up exhausted, I have a respiratory issue from treatment.... How will I forget that when I feel like this?

Of course she WAS right.

I'm hoping you had a good nights rest and feel much better today.  I still think you should do something special for yourself!

Good luck with the catheter removal.

 

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Thank you for all you said. I was supposed to go into the office today but over slept my alarm. So I stayed home and ended only doing about 3 hours online, then laid down for what turned out to be 5 hours. Yes I do need to keep in mind it is my body killing the monster. I also have problems with constitpation and had to start the stoll softner stuff today. I hope it kicks in soon. 

The cath removal went fine. A friend of my one daughter works in that area and was there when it was put in. I was so glad to see her there for it being taken out. Right now we have to keep a special bandage on it and change it twice. By sunday I should be able to put a large band-aid on it.

 

I guess what bothers me is not being sure if some of these things I should call the oncology nurse or not.  

Next Tues is the last R-Chop which means the last round of Prednisone. I am so ready to be done with that although I wonder if I might have to take a few extra days off to allow for the additional sleeping. I am glad the crash starts on Memorial Day weekend so Monday is a non-work day. But Tues I also know about the red cell count and if that is what is making me so tired. I thik once this last R-Chop is done I may have a different mental attitude knowing that it don't have to face it again. (At least I hope not.)

This weekend will be one for resting.   

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Rest is your friend, your mind and body will thank you.  You deserve it!!!

Be good to yourself.  Your last treatment is around the corner, a mixed bag of emotions I bet.  Who doesn't hate treatment days?  But they kick the monster where the sun doesn't shine.  If you knew me,  you would know how surprising it would be for me to use fowl language.  One treatment day I used anobscenity and gave cancer a dying send off.  My nurse loved it and added a few more choice words.  We laughed and oddly it felt good.   

Call the nurses for whatever you need, you know they're wonderful.  Don't feed the monster and I found out there are no badges for being a great warrior.  The nusres might know the magic trick or have an answer that can put your mind to rest so you can move forward.  Worse case senerio, they can't help???  I was speaking to my friend who is an oncologist.  She is 100% accessable to her patients (Mostly their parents) and last week she said no one ever abuses it.  Besides it's their job, they are special in this field.

Side effects are torture especially constipation.  Stool softeners, rasin bran, all bran, bran muffins, H2O and peace.  No stress for you!  

 Next week is a big week, I WOULD take the extra time.  Absolutely.   Not only do you need it but deserve it too and if you need another reason make it celebratory.  Personally the cumulative effect was present and a tiny bit harder for me.  Mentally you will also benefit.  Take a break, listen to your body, plant a flower, read a good book, listen to great music and watch a comedy.

REST and give yourself the break you just might need!

 

Enjoy and have a wonderful weekend!

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

So Thur when I got home from the cath removal I laid on the couch and only got up to go to the bathroom and to go to bed at night. Slept so good I slept through my alarm and didn't get up until 9 am on Friday. I did start taking the stool softner that morning. Emailed boss to let him know what was going on and that I would work from home. Worked about 3 hours and felt tired. Took a nap that lasted about 5 hours. Slept good that night too. Yesterday was more normal. I was up about 4 hours before laying on the couch. Even so I didn't sleep much and was awake to watch the Preakness. Great race! Today I took it slow again. When I went to church I had to part further away than I usually do and I felt the extra 20 or 30 feet. Same with going back to my car. When I got home I laid down right away. I know with all of this sleeping I am not drinking as much water or eating as much as I should. I am working on drinking my 2 liters of water, or lcose to it today & tomorrow. Food, I never had a great sense of taste but I have noticed a difference with some foods. Bland foods, little difference, spicy foods (which I like) I can still taste the spices. The stuff in between I get a weird taste and find myself avoid them. I am daily having a nutrional drink, V8 & a protein drink, not all at the same time. This is probably a major cause of not having daily bowel movements right now. I can tell my husband is getting annoyed everytime I don't eat solid foods and keeps trying some different things. I will give him credit for trying.

Stress is easy to avoid. My work actually relaxes me. I took yoga back in college so when I do feel any stress building I use the breathing techniques to relax. I can't believe how you got through all of this and not be able to tell most of your family know about it. Right now I am feeling that I am telling my boss I am working from home tomorrow. I am going to need this week to start rebuilding my endurance. In general my atitude is better than it was a few days ago. of that I am happy about.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Take the time you need, listen to your body and kick cancer where the sun don't shine!  I hope you work from home tomorrow and be good to yourself.  This is a tricky time to say the least, mentally and physically.  

Do you juice or make smoothies?

I swear there is somthing magical in by blender.  Actually I have a Vitamix.  I bought it for Father's Day a while ago, only now do I use all the time.  I combine kale, beets, ginger, tumeric, apple, acai berry smoothie mix, lots of berries and coconut water.  Not sure why I started perhaps seeking nutritional benefits.  It wasn't until I traveled and didn't have them daily, did I notice my health was worse.  I make a green juice which I love.  I change them around but usually have apple, kale, ginger, cucumber, celery, parsley or basil and lime.  I stopped doing this around the time I had my good scan.  Not a good idea, I did not do so well this week.  I didnt need a nap I crashed, breathing was labored bla, bla, bla.....  Then an epiphany, dusted off the jucier.  I really need to do this daily again.  I shoot for  thirty OZ a day.   The smoothies might be great for you, natures brom and both the smoothies and juice is like an infusion of another kind.  Pure, fresh vitamins.

I've actaully did a great deal of reading on the subject but because I have always lived an amazingly healthy lifestyle and diet and having a cancer diagnosis I'm harder to convince.  All I can type is that I really do feel better and my scan was better than my oncologist though it would be.  I also reduced my protein.

Keep the good attitude, continue to be good to yourself and get through this last treatment.  You're going to do great, I can feel it!

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I am so thankful for you sharing your experience with me. It really did help me get through the last few days. I got a good night's sleep last night and woke up ready for my last R-Chop. Everything went well. Talked with my Oncologist. In 3 weeks I have a treatment that is Rituxan only. That will be my 6th Rituxan. At that time she will schedel another CAT scan and an appt with a dr at Rush. He was my second opinion for the original treatment and is head of Hematology there. He will go over the scans and determine if phase 2 will be Rituxan maintenance or other treatment involving stem cell. (I can't remember the exact name the dr said.) All I can do is like we do at work - Hope for the best and plan for the worse. 

I am terrible when it comes to eating fruits and veggies. Although there are probably more fruits I eat then veggies. I have a Ninja and an osterizer mixer. My husband uses this last one for make my protein shakes. I have added V8 to my daily routine to get more of the benefit of the veggies. I have looked at smoothies but there is always something in there I have nver tried. Now your apple, kale, ginger, cuucmber, celery, parsley or basil & lime sounds doable. I've never had kale but I do like salads now & then. I don't do berries or beets. I do like tumeric and coconut water is a possibility. When it comes to spices I love the hotter ones used in Mexican, Indian & other far Eastern foods. I have also found that spices like tumeric & ginger can be good at fighting inflamation. What I really find interesting is what you said about not haivng your drinks regularly and noticing a negative effect on your health. I hadn't thought about that. I need to remember to keep up with the V8 and any smoothies I find I do like. Not that summer is here I can get back to eating grapes again. I love them but during the winter they don't taste as good as during the summer. Maybe if I get going on some of these changes now that CAT scan will come out btetter than if I don't. I'd rather try than not try.

I have to tell you about anoher biggie - I took my first real shower today since early January. That is when the catheter was put in and I could only take sponger bathes as long as I had it. Now that it is out it's shower time!!!

I am going to see if my son can do a drawing of "kicking cancer" for me to put on the frig. Bet my grand kids will come up with their own version. More positive images. You have helped me to realize that the long view is every bit as involved as what I have had to do during this treatment phase. So the next 3 weeks I am taking it one day at a time. My planned worked schedule will stay the same with a warning that it could change at a moments notice. During these next 3 weeks I also need to take a short nap after work (either at home or at the office) even if I don't think I need it, I probably do. 

I a so glad we started talking.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Wow, you definitely sound better.  It must be the shower, ha, ha, ha! 

You're gaining ground and that's a good thing.  I remember my oncologist sat me down one day and started to tell me about treatment.  He told me he wanted to put in pic line for a month (June) remember I'm hiding this and at the time my children didn't know therefore I thought to myself how am I going to hide this rubber tube sticking out of my arm and how am I going to take a bubble bath?  The first thing I asked him while I was looking at him as if he had two heads, was about the bath and he laughed.  He's married to my best friend and she told him that was going to be a problem.  End result no PIC line.  Needless to say I get it and how wonderful it is.

I have to say I was in a rather pissy mood yesterday but when I read your reply I was smiling ear to ear and I have to ask (coming from a vegetarian), what on earth do you eat?  Of course I love those freaky green leaves and all things veggie, I can't imagine anyone else not liking them.  I laughed at the summer grape comment!  On a more serious note, right now more than ever you need your vegetables.  There are all kinds of juice bars opening up, you should find one and try a few.  I made something yesterday and it was incredible.  I ran out of my usual ingredients so I just got creative.  I used two tangerines, one apple, ginger, kale, celery and a beet.  hard to imagine especially for you ;-) but really good.  Actually you would have like this one because it had lots of fruit.  This was made with a juicer not Vitamix so it was smooth liquid and pure juice.  Here's why I love to juice, they not only taste good and good for you.....

They PISS OFF cancer!!!!!!!  I Love putting cancer in it's place and blasting it off into outer space to annihilate it. 

I learned the hard way, I wasn't good to myself.  I ignored what I was going through and warrior mode escalated much of my behavior.  I am thankful for most of it but I now realize how incredibly important and difficult it is.  Treatment will pass, recovery too.  It's best to recognize yourself more than ever Right now.  Be good to yourself, today and everyday after.

You're smart, hard working and a fellow warrior.   

Keep up the great work! 

Thank you for the kind words, I too am glad we are communicating.  I really don't have anyone I talk to about this stuff and let's face unless your in this club, it's hard to understand where we're coming from.  

Have an awesome day!!!!!

 

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I always tell people I am a carnivore. I will admit that as I have gotten older that my meat preferences have changed, I was never a big fan of beef. Ground beef ok and steak once in a while but that is it. I reall prefer chicken and seafood. Pork has been a good second. Love bacon & ham but have to watch the salt. Growing up we did not have many fruits or vegetables but my brother ate more than I did. My brother married a gal who is more vegetarian than meat eater. So now he eats a lot more veggies and fruits than I do. Because of a change in food attiudes at work there is a lot more fruits & veggies being eaten but I still find it hard to try new things. 

I have been interested in smoothies and jucing. I see kale in a lot of them and then I read warning about usage to too much kale. I have low thyroid but then again, I don't see myself joucing daily. So I am going to give it a try. The one recipe you mentioned with kale, ginger, apple, cucumber, celery, lime and parsley or basil. How much do you use of each? Or what should I start with as portions go? I am finding myself a big fan of ginger. Guess that is why I love chai. It also has cinamon. Since I was diagnosed I am finding myself looking more at some meatless options. Like veggie egg rolls and rice. Main dish though is still orange chicken or some other spicy chicken dish. With the taste buds acting up so many things are weird or tastless. Today my husband decided to treat me to dinner at a local Mexican restaurant. Had chips with salsa and chicken enchiladas with salsa verde. Nice and spicy and everything tasted like it should. Fisrt big meals I've enjoyed in a while.

For chemo my oncologist ordered a port. I like it better than a pic line because it is under the skin and only noticiable if I wear a wide scooped neckline. A little pinch when they put the needle in to establish a line but the line is only there when in use. Otherwise I just have the port. Right now I am following your lead. Focus on kicking cancer's butt. My son and his kids like to draw so I asked them to make some pictures of kicking cancer. Should get some interesting results since the grandkids are 10, 9 & 4.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

The nice thing about smoothies, you make them how you like them.  I use kale because of it's cancer fighting nutrients but you can use spinach, romaine or whatever green you like.  As  far as portions, I just throw in my juice extractor but I'll give you a very good estimate.

 

GREEN SMOOTHIE:

1 large green apple (skin on, washed well).  The underside of the skin has cancer fighters.

1 large engilsh cucumber (peeled).

1 lime peeled.

1-3 large handfuls of greens ie... Spinach, kale etc.

1-3 inches of fresh ginger, peeled.  I love it too.

2-4 stalks of celery.

Small handful of either basil or parsley.

 

I usually double this and use one to two apples depending on how sweet you like it, just to get 30 oz.  Good Luck! 

 

enjoy!

 


Nothing could be more motivating than your grandchildren's artwork, great idea!

 

 

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Thank you. I am going to see about getting the stuff this weekend and try it. Been taking it easy today. Tomorrow is half day for work because it is a holiday weekend. With 2 veterans in the family and some friends that died in service, we don't celebrate the weekend as much as remember them. 

With all of our talk I don't think I've told you about our dog. He is a lab/hound mix rescue and kind of watches over me too. When it is cold at night he will lay by my feet. In the morning he wakes my husband up to feed him and lets me sleep. Once he hears me moving around he comes in the bedroom as if to check on me. While I watch tv he is usually near me. Right now he is starting to pace because it is after 10 pm here. By 10:30 he iwll come and stare at me as if to say "time for bed". He can be somewhat skitish around new things bbut when I was using a walker after the surgery for the perforate bowel, he didn't flinch. He walked along side or in back. It was as if he knew how to behave around such things. I don't think he was trained for it, just a natural. He helps him to keep going too. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I understand, I too have veterans in my family and regrettably two I never had an opportunity to meet.  This always marked an incredibly difficult time for my father because he lost so much.  Our Memorial days were alway somber and quiet.  It was like walking on eggshells.

As for the smoothies, I failed to write/type I made a few duds along the way.  Apples make everything taste great, hint, hint.  Try it until you like it.  I had a party at my house and recently made one for my elderly friend who's health is declining, he asked for one so I pulled out the juicer and ended up making several for everyone.  It was a healthy hit.

Our beloved Pets are amazing aren't they?  They know.  I have a cat and dog and both are incredibly intuned.  After treatment days they lay with me.  My cat would know know exactly where the needle was, she would sniff and lick repeatedly.  Crazy.  I could go on and on.

I love and adore my fur family they make me smile everyday, they offer such blissful peace just at a glance.  When I need to just be, they're right there by my side.  Actually they NEVER leave my side.......

Have an AMAZING and GLORIOUS Day!

 

P.S.  Remember cancer crashed our party, it's no longer welcome!  BAM!

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I kind of picked up on the apples. I am thinking of using spinach in instead of kale since I have had a problem with anemia for years. Then play with some other things. 

My husband is a good cook but not so good when it comes to nutrition. His idea of a perfect meal consists of beef, lots of potatoes and corn. I have tried to get across to him for years now that corn is another starch and in many ways is more like a potato than a vegetable. So today he makes a casserole similar to one I used to make. It called for rice, chicken, mixed veggies and cheese. Knowing my list of vegetables is short he was just going to use corn. I insisted he use peas insead. He put both in with more corn than peas. Am I right in putting corn in the same group as potatoes instead of vegetables?  I don't feel it adds much except starch & fiber. He also makes me a daily protein drink from whey protein plus I also drink a dialy nutritional drink to supplement.

Just so you have an idea of me and veggies. I like Carrots, peas, corn and will eat green beans. If made a certain way I have eaten broccoli & assparagus. Fruits I am better. Apples, oranges, grapes, cataloupe, honey dew melon, pear and banana. I have had cherries, usually in alcohol. Also coconut juice in drinks and dried coconut sprinkles on desserts. Celery & cucumbers I have used in stuff. Tomatoes I never would eat but loved anyting made from them, especially salsas. I am getting better with small tomatoes pieces in mexican food. Which means I am also getting used to gacomole. Before the cancer I used to eat a lettuce salad for lunch twice a week. I've been avoiding the salads right now because they warn about washing everythings that is fresh. I don't believe it but I really can't want until I can get back to salads. Now that the Chop is over I am hoping I can get back to eating more fresh stuff again. Starting with smoothies. 

I love pasta but know that I have to watch how much I eat. I do like potatoes but not in the volumes my husband does. As I said with meat, I like chicken & pork and also enjoy fish. Not big on beef or turkey. Husband loves turkey so I have had my fill of that about 2 months ago. 

I've grown up with a dog in the house. We got our first dog less than 6 months after getting the house. A second dog less than a year later. We've never been without a dog for more than a few months. For a while each of our girls had a cat. The one took her cat with her when she moved out. Figaro passed at the age of 16. This daughter has 2 dogs. The other cat stayed with us since our youngest always had a place that did not allow animals. Duchess was about 15 when she passed. Both had liver failure. Now youngest daughter is looking for a place so she can have a pet, probably another cat. Our son & his wife have had a series of dogs but she came from a family that didn't make them a family member. She has now learned otherwise and they have 2 wonderful dogs. She loves them and our all fur babies. They are so calming. If they are nervous they take our attention from us to calm them. 

So this weekend I start my journey on how to help my body fight the cancer. I also need to get back to walking more and to the gym. 

Party time and cancer is not invited.

 

Have a great weekend. 

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

You sound empowered, Amen!

I broke out laughing when I read about cherries, only in alcohol.... hilarious you are.

When I was diagnosis I was beyond shocked because of how vigilant I've been most of my life with avoiding carcinogens and eating right.  But of course there is exposure hence this happening to both me and my father.  The important take away is, had I not have been so vigilant my cancer would have been so much worse.  I have been told this by more than one professional...  The lymphoma specialist I see in Boston is big into intuitive nutrition. 

The most simplistic way to think about it is a raw, plant base diet.  If allowed.  I know there are things that should be avoided (had I of known) when I was neutropenic ie broccoli and other things but I didn't know and fortunetly didn't hurt me.  

Smoothies and juices are equally good for you and both offer a perfect way for you to kick cancer in the a_ _! Because they are plant base and raw.  Because you like fruit you can simply add strawberries, banana, blueberries, blackberries, cranberries (great anticarcinogen too) to spinach and a good piece of turmeric, beets and blend it up.  I also add acaiberry smoothie mix to it along with coconut water for the liquid (natures electrolyte).  With everything mixed together you can't tastes the veggies and add a nasty kick to cancer.

More in a minute, kiddos in the house :-)

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

007,

My first response to you. I have been reading your thoughful posts here since you began.

The largest study in history regarding the etiology (cause) of cancer was published last year, a joint effort by Cambridge University in England, and Johns Hopkins in the US. It compiled all of the data from eighty (80) prior studies on the subject. Astonishingly, it summarizes that these results are facts "oncologists have known for over 20 years."

Its conclusion ? Most cancers (over 70%) are caused by random genetic mutations. That is, they have no (zero) genetic or dietary cause. A few cancers are partially linked to behavior, such as smoking and lung cancer, but many heavy smokers never get lung cancer, and many non-smokers die of it.

http://www.cnn.com/2015/01/02/health/cancer-random-mutation/

I love the title of your thread: "To hell and back." Been there three times myself (clinically dead in auto crash [1986], Stage III Hodgkin's [2009], Stage II prostate cancer [2014] ). 

Going to hell is not the problem, if you always come back.  Dante would agree.   As we submariners say, "There is not problem, if the number of surfaces equal the number of dives."  To me, a fixation on diet is a Freudian defense mechanism, a belief that we can "do something" to control a misfortune that is not controllable, not anyone's "fault."

I bought all of Jim Fixx's running books back in the 1970's. He was the "healthy heart guru," and everone worshipped him.  His books were all titled Healthy Heart this or that.  Then, at a young age, he died of a heart attack, while running.  The blatant irony could not have been more in-your-face.   

All of his books claimed to prevent what he died of at 52 years old !

http://en.wikipedia.org/wiki/Jim_Fixx

You eat spinich, and I will eat fried chicken, and the effect on lymphoma, or lymphoma relapse, will be nothing.....

max

.

 

 

Anonymous user (not verified)

I mostly agree with you Max except that vegetables and fruits may actually be worse for you than the chicken. So-called organic vegetables are "self certified" and a dishonest person can easily get rich by selling ordinary vegetables as organic. This is doubly true since 2/3 of our vegetables and fruits are imported from around the world with zero inspections or production controls. Snake oil can be found not only on the internet and TV but also in the vegetable isle. the only thing that can reliably help is eating less. It works. Don't eat a lot of anything and ignore the pseudoscience scammers. An occasional smoothie or juice drink tastes great but should not be a replacement for other forms of nourishment. And unless you are eating dioxin the effects on lymphoma will be minimal if any.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I told myself I was stayng off the boards for the weekend. Well, I got bored. 

My goal for the juice and smoothies is to boost my system to help rebuild my blood counts and general health. I have just had my last CHOP and counts are low. Right now I would rather try natural foods to rebuild than my supplements. I could never be a true vegetarian since there are meats I do love and would miss eating. Right now I am not eating much meat because of the taste buds being AWOL. Main diet is whey protein drinks, nutrition drinks, V8 and now adding smoothies. This last is something my taste buds never had so I won't know if they taste "different". I also have found food with strong spices (Mexican & Indian) seem to "keep" their flavor. Unfortunately my husband does not like these kinds of foods so I don't have them very often. 

I remember the Jim Fixx days. He did a lot to promote a healthy lifestyle. At least until he died and the way he died. Then his name became almost a joke. "Live healthy, eat healthy, die anyway".

It seems like a long time ago I read an article that said everyone carries cancer cells in their body. It's just that they are dormant. The key is what activates them. If that is true then there is no way to keep cancer out of our bodies. Can we control when they activate? I doubt it. Can we do anything to help our bodies be strong enough to help fight the cancer if it does activate? That I think we can do. But we are all different. What works for one person will not always work for another. 

As far as what foods are good or bad, yes. Read about what we spray on our crops to make them disease resistant and grow better, Yuck! Of course some of these plants are fed to farm animals that provide meat for us. Is that any better than eating the plants? Oh, let us not forget how we feed meat by-products to our animals that don't eat meat. In some cases the by-products are the same species making our vegetarian animals into cannibals.  Ok, I get very cynical when it comes to our food system. Soylent Green is one of my favorite movies to indicate where we could be heading if we keep this up. Gets to the point where it seems the only safe thing is water. Howver tests are showing that many drugs & supplements we take end up in our drinking water. They try to filter them out but don't get them all. One guy claims that chemo drugs are the worse. Think about the drugs put in our bodies to fight the cancers. We don't use all of it and the extra is flushed out in our body waste. That goes into the sanitary system and eventually can end up in our drinking water. So what can activate dormant cancer cells. Why not "used" chemo drugs?

Sorry. I can get into also sorts of doom and gloom theories. Been reading Sci-fi for a very long time and there are lots of "end of USA/earth/solar system" stories. It isn't hard to turn some of those stories into "what if' scenarios in my head. Ok, so now that I kind of killed any happy moods you may have had let me say this. I was raised that nothing we do can affect how long we live. All we can control is how we live our lives  and we should endevor to do the best we can. 

This being Memorial Day weekend let me end with this.

Thanks to all who gave their lives in service to our country. And prayers to their familes who miss them and will always remember them. 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I'm not sure why I feel like I need to defend myself.   You're right to a degree.  Greed exists but not all organic food is a product of deceit.  Of course one needs to do there homework, I buy organic and wash my produce more than most probably do.  I buy local from trusted farms but still I'm a skeptic but can tell you true organic food not only tastes better, it is better.  

I just put in a small organic garden.  All the soil, seeds and plants were used.  I know it's a feeble attempt against acid rain, polluted air and water but I'm doing it.

Poultry better?  Hum, I don't think so.  

I'm not here to convince anyone.  I do believe the food industry is corrupt and do my best to protect myself and my family.

Nothing is perfect,  I am more optimist than skeptic and simply do the best that I can.

I never said anywhere to drink a smooties in place of other nourishment.  Last week I hired a  nutritionist, in the course of our four hour meeting, she consumed two juices that she premade that morning and brought with her.

Somewhere focus was lost and my words were misconstrued.  I just observed I felt better and do.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

GKH and everyone,

The following article at least indirecly ties in with the discussion of "healthy lifestyles" here.  I find it fascinating in that it is yet another major university study that turns long-term, conventional wisdom on its head.  Yesterday's miracle health solution always becomes, year's later, tomorrow's death sentence.   When I got prostate cancer last year, I read a lot about saw palmetto supplements -- a multi-billion dollar "prostate health" scam.  Every major study ever done shows it to be no better than placebo (but neither is it harmful).

My mother-in-law has always refused to get a cell phone, or even use a cordless phone, because they "cause cancer."  Of course, they absolutely do not, but now we see that they are apparantly remarkably good for the brain.  I recall when a lot of people would not use a newfangled invention called the "mircowave oven."   As a sub sailor and nuclear weapons technician for many years, I was trained a good bit in radiation health and monitoring.  Several people have asked me if I thought "being on a sub gave me lymphoma."  I tell them "no," because engineering studies establish that a day on a sumbarine gives a person less whole-body radiation than a day at the beach.  George Carlin used to do a regular skit, in which he pretended he was a news reporter.  One piece had him say the following: 

"This just in in medical news:  Scientists have discovered that saliva causes stomach cancer, but only when swallowed in small amounts, over many years."

Read and enyoy, and call and tell your friends !

http://www.popsci.com/technology/article/2010-01/cell-phone-exposure-reverses-alzheimers-and-boosts-memory-mice

 

.

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Will have to read your link later, not loading at the moment.

I had to laugh, my friend sleeps with the phone under her pillow.  She's the kind of doctor who gives her cell number to all her patients and their parents.  She is 100% accessible.

All I can say is we have to listen to our bodies, if something makes you feel better......do it.  I'm not into trends and a bit of a skeptic but I do and will continue to live a healthy lifestyle.  I don't clean my house with chemicals or spray my lawn, I eat well and simply do what works for me.

My husband is a trial lawyer, there are always studies supporting both sides to the argument.  Recently I have had the opportunity to be in the company of some of the greatest doctors in the world.  One of the Doctors I spent some time with, his credentials took an extraordinary amount of time to get through it was absolutely incredible.  Young and humble he is, everyone was in absolute amazement and that was before he addressed the case.  

Thankfully there will always be new studies, some good and others not so good.  Hopefully we're moving in the right direction and were intelligent enough to decipher through the junk.

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Thank you for your response.  I mean not to misconstrue you or anyone.  This dialogue began not on my soap box but rather through observation.

I only noted my experience.

I agree with much of what you said but science is constantly changing, new data collected giving fruition to yet another study supporting a new or old theory everyday and still not explaining every case seneario. 

One of my closest friends, is a  researcher, owner of a pharmasutical company which developes new age cancer drugs is one of my biggest advocates.  She insistes I'm on the right path, explains how many drugs are plant derived.  Recently she too had a scare and her response to sitting in an oncologists office herself started a neighborhood organic cooperative garden.  We did the best we could with organic soil, seeds and plants.  

My very dear friends are both oncologists, Johns Hopkins alumni and have a MD-PHD.  When I was rather angry and skeptical at just about everything, one of them told me that it was her belief that I could be much worse and "NOT" to change my eatting habits.  This is coming from a woman who travels with me, lives with me for a month at a time and witnessed much of my experiences I previously noted in other posts.  She has one of the highest survival rates in the country for pediatric brain tumors.  She's developing a new hospital and implementing new and exciting care for children in my city.  Nutrition is a new part of her program. Her husband is my oncologist and after my last scan he told me, whatever I'm doing keep doing it.  I don't have an answer as to why I or anyone else has this horrid disease nor do I know if it will come back.  No doubt genetic rogue genes plays a role.

Considering my father was diagnosised with Mantle Cell lymphoma three weeks after my diagnosis....I admit I'm terrified.

My intent was nothing more to share my experience and how it helped me.  

I'm not a fan of soaking my produce in vinegar water, scrubbing then rinsing them again or cleaning a multi unit juice extractor  everyday but I do it because it helped me get out of bed, off the couch and breath easier.  I have a bit of a problem in this area.  Only by accident did I realize that I felt better when I juiced.

In some ways I'm similar to Fixx, lived a clean and healthy life only to get cancer but thankfully I'm not him.  Truth be told, I only thought I lead a healthy lifestyle.  I didn't wash my produce the way I do now and didn't consume as much raw foods.

I'm sorry for your visits to Hell, stay out of there would you!

So you eat fried chicken, I eat spinach... May we dive no more and swim peacefully at the surface.

 

OO7

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

007, I have enjoyed this back and forth conversation between you and lindary. I feel that I know both of you better because of it. A couple of times, I wanted to join in but refrained. 

Like you, I have always believed in a healthy diet and lifestyle. My diet has always been based on plenty of fresh vegetables and fruits (organic when possible), whole grains, healthy fats and oils, nuts, seeds, legumes and tofu. I rarely eat meat and when I do it is a small portion, with most of my meal being vegetables and grains. I like tuna and salmon. My guilty pleasure is cheese. 

My diet provides steady energy and plenty of vitamins, minerals, essential fatty acids, and dietary fiber. I use high quality vitamins and supplements, as needed. I take no prescription medications.

And yes, I got cancer anyway. And my diet does not guarantee I won't have it again. However, I am otherwise in great health. My weight is good, my blood pressure is good, my glucose and cholesterol are good; in the past few months I've had a mammogram, colonoscopy, CT scan, and complete blood work, all with excellent results. I don't have digestive or sleep problems. I am happy and optimistic and at peace spiritually and emotionally. And I believe my diet and lifestyle have everything to do with it. 

Hugs,

Rocquie

"Let food be thy medicine and medicine thy food"  --Hippocrates

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I fell of the radar!

Sorry for the late response, I was busy with my children, the holiday and travel.  I arrived home late last night from Dana Farber in Boston.  Like you, I got an amazing bill of health, so relieved!!!!!  I just wanted to climb the top of a mountain and scream, "cancer Free"!  Of course, I'm not completely but pretty darn close.  Downside of this bloody disease. 

How odd it is because of my predicament, I can't yell to my world.  It felt so strange, I wanted to tell my parents and couldn't.  My grandmother, brothers, cousins, many of my friends etc.... Nope.  A tad anticlimactic but I did it.  In the cab ride and on the plane, I decompressed quietly, thankfully with a calm resolve.  There are a few people I can do my Happy Dance with so all is well.

It's been a long and challenging road, one I hope none of us have to face again.  Perhaps it's not what challenges us but rather what we do with our challenges.  

I'm not certain I did things right but I don't feel I had much choice.  I took a bit of flack for making this diagnosis a secret but I feel in my heart I did the right thing.  One can only hope.

 

I'm glad you're well, I hope and pray we all stay that way!!!!

OO7

Hugs right back at you!

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Sorry for being aways for almost a week. Hi to those who have joined our exchange. The Prednisone part of my last R-chop hit me hard. I though it would be like the previous cycle and I could get ahead of it by resting the weekend. Normally I would be working from home Mon & Tues but since Mon was a holiday I planned to rest all day Sun & Mon. So Tues was going to be easier. Wrong. Put in 3 hours and then it was nap time. Wed was back into the office. Barely made it to my desk and sat there for 4 hours dealing with email and meetings at my desk but not getting up. I did start moving and walking around a bit after that. Fortunately I did feel better by the end of the day. Understand that it is easy to say I should have stayed home but I have learned from the previous 5 treatments that being in the office seems to energize me. Of course when I got home Wed I was tired so just ate & rested. Thur better but still tired when I got home. Fri felt almost normal until about an hour affter I got home. That is when the "tired" feeling hit again. Today was the first day that felt more normal. Friends of ours had a cookout that ended up inside because of the lousy weather. It was great seeing everyone. What was even better, the talk was not about my cancer. We talked about stuff like we always do. 

I am hoping that having the smoothie with spinach is helping to build up my red blood count. I know that will help relieve this tired feeling. Having been anemic since I was a teen I know the feeling when my iron level is low. All I can say is that I have been worse but I was younger then too. So in about 10 days I have my 6th Rituxan treatment so I'll see what the blood test show then. It also means the after chemo test will be scheduled and reviewed. Then word on what is next. 

In the meantime I am going to focus on how to make the healthy choices I've been making the last few months a more regular part of my life going forward. Easier said than done because my husband does not believe it's a meal if it doesn't include meat and fish is not meat. I have finally gotten him to accept that protein does come from source other than meat & fish. I am also going to be getting back into the gym at least once a week to start building up the muscles that have turned to jelly with all of the resting I've been doing. 

 

007 - You are Cancer Free!   What a great statement to be able to say.  Laughing I feel sorry you can't share this with parents & other family members but I do hope your husband & kids will celebrate with you. Have a nice dinner out. Maybe a weekend at a beach or something. I am very happy for you.

Talk to everyone later.

Linda

 

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OO7
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Glad you're back!  You sound great, hopefully moving forward you'll feel better too and the horrid fatigue will become a thing of the past.  I feel very gratful I'm not walking into walls and staring into space like a zombie.  I only had one bad day in two weeks.  My Boston visit was very good to say the least.  I'm not exactly cancer free but pretty darn close (follicular is incurable).  I just say and think I am, not only is it easier but t's the way I think.  If it decides to crash my party again, I will be ready to obliterate again. It's dead to me, I'm not living with worry or in the land of what if's.  Every doctor I recently saw said the same thing, healthy eating, physical fitness (need to work on that one more) and managing stress.  That's a big one and rather important.  Stress feeds the monster (cancer).  

I did have a very, very rare side effect to the rituxin but that too is going down.  Side effect is making the phyical fitness a bit harder for me but I have always loved a challenge and LOVE to work out hard so I have a great incentive to overcome the nonsense with my lungs.  I love being in the zone, completely exhausted and when I think I can't give another nanosecond...... I blast through like mighty freaking mouse with a reserve of energy I never knew existed.  Bam!  I really want to get that back.  One doctor said I may never get there again.  I may not but hearing those words, I'm making it my mission is to prove him wrong.  I'm certain it's how I'm wired, I'm all messed up but don't give a da_.  I just have to do it.

I had an eighteen year gap of not working out.  I don't like, how I feel when I don't.  Right now I hate how I feel so I really need to figure this out.  Fortunately summer is almost here, that should make it easier.

 

Last summer someone told me to take it one day at a time.  I took it one breath at a time, it was pretty bad back then.  Whether we take baby steps or a running leap, as long as it's in the correct direction we'll benefit!

 

Have a GREAT week!

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OO7
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Dinner dilemas and normalcy.  

I haven't had meat in over thirty years, occasionally I eat fish so I could have endless suggestions, ie, soups, salads, pasta, grilled vegetable pizza, sandwiches...  If you have any questions ask away.  

I woke up at one in the morning and just stayed up.  Over tired and feeling off due to my neighborhoods lawncare (horrible). I just sat down in a quite room, put on some beautiful music and  let my mind go.  My son knew I was tired and asked why I wasn't watching T.V.?  I tried to explain but he thought I was strange.  It was only for a minute but it felt great.  I need to do that more.  

I'm no expert on getting back on track but would hope you're being very good to yourself.  Listen to your body and go slow.  Treat yourself to a quite moment, let your mind decompress and enjoy the peace.

 

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lindary
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I just read your post again and had to smile. I am almost the ocmplete opposite. My diet has always been centered around meat. I am not a big veggie or fruit eater. My idea of exercise is Mon thur Fri walking from my car to my desk. I don't park close to the door so I do get more walking and the building is big so the total walk is long. Yes I am overweight and old enough that losing weight is not an easy task. I have taken vitamins and supplements for several years. I am also on meds for high blood pressure and thyroid. Cancer is truly an equal opportunity disease!

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lindary
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Rocquie, I am glad you've enjoyed reading our exchange on this thread. Please feel free to join in at any time. 

To all, This is my first 5 day week going into the office every day in over a month. It seemed that with every 3 week cycle on this 3rd week there was always a test or some medical appointment that was scheduled so I was never in the office 5 days in a row. I am tired. Part of the problem is that the 5 days of being on the Prednisone followed by the 2 -3 days of the crash, I tended to sleep until I got up. Really messed with my sleep cycle. I know if I go to bed too early now I will wake up in the middle of the night, toss & turn for an hour or 2 then go back to sleep. End up sleeping through my alarm. So what I am trying to do is make sure I am getting 8 - 9 hour each night and get up at the same time each morning. Like everything it is going to take time to get back into my old schedule. 

The great thing is at work. No comes up and asks me how are the treatments going. Each work day starts with "hi" and ends with "see you toorrow". For me this is a sign of normal. Next week I do have the 6th Rituxan treatment and then I iwll find out when the test will be scheduled to see the results of the chemo. But I try not to think about this part too much.

 

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OO7
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Just checking in!

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lindary
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I feel like I am between a rock and a hard place. I keep saying I have follicuar lymphoma but I actually have that plus DLBCL (diffuse large B-cell lymphoma). The dr had suspected as much and had it confirmed when I had the surgery for the perforated bowel. That was at the end of January. The light bulb just went on in my brain last night. 

So yesterday I had my 6th Rituxan treatment. So all 6 chop treatments and all 6 Rituxan treatments are done!!!!  In 2 weeks I have a CT scan done. Then the following week I see the specialist at Rush hospital to find out what the options are for the next step. I know a lot depends on how successful the R-Chop has been. But "knowing" now that I really have 2 types of lymphoma makes my wonder (worry) even more, what is next. I guess the good news is that I have so much going on the next couple of weeks I am hoping I won't have much time to think about this. 

I can't help but wonder if I've had the follicular lymphoma for a time without it causing any real issues. Long enough for it to morph into the DLBCL which may have been the real cause of the tumor and problems I had in December. I'll never know for sure but it gives me something else to wonder about. 

So for now I am just going to enjoy that fact that I have no more 3 week cycles of anything. 

How have you been?

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OO7
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Congratulations you're done with the treatment right?

Irregardless to midnight epiphanies, your doctor suspected and treated you for the DLBCL.  This is good.  Worry is not.  I know there is little we can do to prevent it but when it creeps in, for me I tell it to go straight to He_ _!  

I was wondering why you had 6 chops in addition to your rituxin.  I can't lie getting scanned, no matter how positive you are; I think there is a bit of terror that lies deep within.  I knew with every fiber of my existence I was going to be fine but perhaps because I never thought I would have cancer, I had a sliver of doubt within my armour. 

No matter what, you'll fight this with great strength and stamina!  I pray you have an perfect result, keep me posted.

As for me I'm doing well.  Thanks for asking.  I don't get as winded as I used to but now a few dizzy spells. I think I'm perfect and invincible then reality kicks in and I know I'm not there yet.  I never take it easy.  I tell you to be good to yourself because I know the alternative.  I need to rest more, I just don't know how?

Funny story.  I love to garden and after cleaning and gardening for two straight days, I wanted to finish a little project.  It's a little bit  from my house but I wanted to clean out and plant four medium plants.  I was over dressed, but by the time I walked down there I wasn't going to walk back and change.  In the hot sun, moving earth, digging and throwing weeds over my escarpment, planting my plants I was about to passout.  I was out there for a couple of hours when I realized I needed water.  Super dizzy I just wanted to collapse but knew there were snakes living in the stonewall where I was working and no way was I going down where the snakes live!  Practically run up to the house!  I must have been quite a site because my children came out to help and brought a gallon of my crazy water with them.  I diffuse cucumber, lemon and lime  slices with sprigs of mint overnight to drink the next day.

Stay positive you're doing Amazing!

 

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OO7
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CSN does not like emoji's.....

I had to delete them for the message to go through.  

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lindary
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I've been busy enough the last few days that i haven't had a lot of time to think about the CT scan. I do agree that when I do I wonder if the chemo did enough. But then something else comes up and I am off again. I did catch myself limiting hw many tmes I go up & down the stairs in 1 day. Then I had a day I had to upstairs 3 times and each time, when I came down, I realized there was something else I needed from the upstairs. I was defintely winded when I was done but the next day I was able to walk better without getting as winded. All we can do is keep pushing ourselves a little bit more to get our bodies to be stronger. 

I've had a few time when I'e gone out on a warm day and forget my water bottle. My co-worker who is a cancer survivor keeps reminding me "water-water-water". I thought she meant just while I was doing chemo but I realize now that it is somethng I need to do for some time afterwards. I've got some 16oz bottles that I find will fit in my purse easily. I carry large a purse. Even so I still have gone out without one and end up getting that light-headed feeling like you had. Now I am one of those people that likes snakes. However I am not sure I would want to be laying on the ground when I know there are a lot of them in the area. Glad you were able to get back to your house and your kids came to the rescue. 

We are having a cookout tomorrow. All of our kids will be over, that include the 3 grandkids. I haven't seen them since Mother's Day. Well, my one daughter I see every so often since she works in the same place I do. It's funny in that normally I don't see my kids that often. Plus up until about 2 years ago I saw my son & his family only once a year since they lived several states away. But the last few months having periods of time were I had to be careful about being arond people who might be sick, and with little kids there is always someone sick, I really miss seeing them.  Thankfully with text messaging, Facebook and Skype I managed to keep in touch with them but it is so nice to see them face-to-face too. 

Have a good weekend and keep a bottle of water handy.

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OO7
Posts: 282
Joined: Sep 2014

Children and grandchildren, sounds like a great weekend; enjoy.

I recall durning more stressful times, wondering, treatment, my father etc...  I would surround myself with everything that was funny, cheerful, no world or local news (nothing negative).  Girlfriends and laughter and I imagined the treatment working and killing the cancer.  I made my poor sister in law uncomfortable because I would constantly make jokes about treatment, the ugly blankets... anything I could.  It was hard at times because there's nothing funny about treatment or living with this but perhaps it was how I coped with hiding the monster.  Crazy.

Amen to water, no one told me about it.  I hate the stuff and joke that I'm allergic to it hence the fact I add all sorts of things to it but it's a game changer for sure.  Anything to flush out bad cells.

 

Enjoy this weekend!

 

 

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lindary
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We had a great time last Saturday. No rain until the evening. The grandkids, my husband and our one dtr got to play in the pool. We had our cookout and ate outside. about the time our other dtr and her boyfriend had to leave it started to rain so the rest of us moved inside. The grands all were good. Sometimes the older 2 get into it but this time, no arguing. 

I am back to working 5 days a week. Of course just to add some challenge to this time, my boss had knee replacement surgery yeterday. He is doing good but will be on disability for 2 weeks. Then he will be working from home for a while before he is back in the office. I am enjoying being able to work on stuff and not having to think about treatments and what days I am not going to be in the office. 

Being tired seems to be a normal thing anymore. I try to get 8 - 9 hours sleep. It seems I feel better duirng the day if I do. Less than that I am really tired. More I feel like its too much sleep. I also went to Curves for the first time since like Nov. Only did about 1 1/2 times around and was tired. Did feel better the next day. My goal is to get in there every Saturday morning. On weekedays I don't work, or get out early, I am going to try and get in then too. At least it is a plan. 

To be honest, being at work gives me many chances to laugh. Anyone who didn't know us would think we were all nuts. Maybe we are!!!

As to the water. Quite a few years ago it became a regular thing to see people walking around with a water bottle instead of a can of soda. Then we had 2 people in our area with cancer. It seemed everyone started eating better and more people were drinking water. That is when I got started but, like you, I wasn't sure I could drink more than a few cups. Cold water during the summer was easy. Water at all duirng winter, not so easy. As time went on I really got to liking the taste of water, regardless of the season. Good thing because it made it easier to drink the 2 liters a day during the treatments. 

Have a good week.

 

 

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OO7
Posts: 282
Joined: Sep 2014

Family and work sound great!

Curves too!  I need to get back at the club, I feel absolutely best when I go.  I can't do everything at the same pace but I don't care.  The hard part is getting up and going.  If you make it through the door you're already a winner!  Unbeknownst to me, last summer a workout fixture at the gym and wonderful woman I know had a stroke.  She was taking medicine for menopause which she believes caused the stoke.  Anyway,  my point is she goes all the time, everyone has a story and all are trying rise above.  She inspires me everyday, along with most everyone else in the place.  It's empowering!

Because I used to be a gym rat, going back a fraction of what I used to be was painfully hard.   Getting my mojo back was a big, flipping the cancer the bird moment for me.  Love it!  What imagery, 115 lbs of me, yelling obscenities to my microscopic cells...... Sorry!

Whatever I managed to do was success and it will be for you too!

My father is in pretty rough shape physically, it's horrible yet I watch him, working out in his chair, on the bed and if I'm lucky at the kitchen sick. He has horrible neuropathy in addition to other problems but he tries everyday.  Perhaps he's where I get it from.  He's never been in a gym but he never sat still and always worked harder than anyone I have ever known.

Hope the sun is shining where ever you are, have an amazing weekend!

 

Tomorrow I'm going white water rafting in the pouring rain with my family and oncologist, crazy as it sounds I can't wait... (I'll tell you later why).  Wish me luck!

:-)

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lindary
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Joined: Mar 2015

I've known people who have had to deal with neuropathy. All I know is that it is rough. My former boss has it but no a real bad case. She has some feeling in the feet. Her hands are ok. As long as he keep fighting it he will keep going. 

The weekend has been busy. Taking car of my one daughter's dogs has b=me going over there twice a day. Fortunately a friend of hteir's will be taking care of them in the morning during the week. I do enjoy the extra walking. It is hard the first day or so and easier as the week goes on. Plus it is good for me. Now I am going to meet up with my son & his family for the local carnival and food fest. Glad we didn't go yesterday since we had a lot of rain around here. Should be fun. 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

Girls,

You gotta try this salad; I saw it on a Martha re-run recently,

 

http://www.pbs.org/food/recipes/kale-caesar-salad/

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Sounds wonderful!  I'm growing Kale in my garden so I will try this tonight or perhaps this afternoon for lunch.  I love the hearty green it holds up better than any other green in soups.  I make an Italian soup Ribollita which kale  is wonderful in.  Thanks again for sharing, have a wonderful day!

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lindary
Posts: 695
Joined: Mar 2015

Last week turned out to be a lot busier than I thought it would. Tues was the CT scan to determine the results of the chemo. I was also taking care of our one daughter's dogs while she was on vacation. That with work left me a little tired by the end of the week. 

Today I saw the specialist to find out the options for "after chemo". He was glad to hear I had no problems during chemo except for the perforated bowel. I was hoping to hear the results from the chemo but it seems he needs more than just the first and last CT scans. There was one done after the 4th chemo which he was not sent plus info on the surgery I had for the perforated bowel in Jan. Once he gets all of the info he will present it to their medical group. They will review everything. The purpose is to see if they all agree that the cancer is gone. He is optimistic in that I tolerated the chemo so well. Not sure if one really has anythng to do with the other but I am hopeful. I won't heard the results for about 2 weeks. 

Linda

   

 

pj2015
Posts: 7
Joined: Oct 2015

Hello, 007

I see you wrote in April this year, hope you are doing better.

This is all new to me and I'm a bit stressed!

I was diagnosed with Mantel cell Lymphoma stage 4 a few weeks ago. Just turned 68 years old, thought i was a healthy nana raising my four year old granddaughter while having her special needs twin brother every weekend. Plus going though the ongoing divorce of their parents we discovered they both may lose the kids.

I do not want their unstable mom to fine out about my diagnosis as this will hurt my husband and i in trying to gain full custody of our grandchildren.

Scar on neck healed. Had a power port put in October 20th. Still feel as though I'm healing from it.  Will start Chemo (Bendamustine & Rituxan) next Monday November 2,2015 for six months. then transplant.What do people do for six hours while getting chemo. Should one eat before going early in the morning?

My biggest fear is i won't be around to see that my grandchildren have the best life possible.

 

Simon24
Posts: 45
Joined: Oct 2015

I wish you well during your first chemo. My husband gets R-CHOP for Diffuse Large B Cell NHL and he always has breakfast before chemo.  We pack a small cooler, with yogurt, granola bars, a sandwich, juice,and other goodies to bring to the cancer center.  We bring a bag with books, catalogs, crossword puzzles, and a notebook.  Our cancer center has television, but we don't usually watch it. Some people listen to music with headphones.  The first chemo for my husband was about six hours because they had to administer the Rituxan slowly to make sure he wouldn't have a reaction.  He didn't, so now his treatments are one hour shorter.  I hope your first chemo experience is a good one.      Simone

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I'm sorry you're in this group but happy you found this site for you will never be alone.  You have a great deal on your plate.  Right now you need to be selfish and really take care of yourself.

 

breathe...

 

When I'm stressed, I like to take a moment and release all things negative on exhale...

 

It's so terrifying right?  Somehow we dig deeper in these times.  You might even surprise yourself.  You're young and need to watch your grand babies grow so take care and you'll be there.  There are many Mantel cell survivors on this site who will help you along.

During treatment I didnt feel so hot, a tad sensitive to the meds.  I took Benadry, steroid, then Rituxin.  Six plus hours everytime.  I didn't do so well when they rushed it along.  I did much better when the infusion was slower.  I was sleepy, heart raised a bit but ok otherwise.  I brought a pillow, blanket, tablet, book, and four bottles of kombucha.  I never felt like eating more than trailmix that I put together.

 

Just try to relax, read if you like.  Music was always wonderful, I always brought earphones and my phone or iPod.  Chris Botti for me, very calming.

 

I would definitely eat and bring something with you.  Always better to be over prepared than under.

 

Try to remove all negativity, replace it with comedy and all things YOU like.  I stop watching the news etc....

 

Please feel free to reach out, hiding my cancer was harder then having it sometimes.  I wouldn't wish that on anyone but it also had its advantages too.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Chemo day was like a mini-vacation, in a way. I would bring my yogurt, nutritional drink, v-8, some fiber bars and cheese nips. I am one who has to have the tv on for background noise, if nothing else. I bring the cross-word puzzle from the daily paper and a book to read. Also my journal to update it. Near the end of the R-Chop sessions I found my self sleeping for an hour or two. I thought the time went pretty quick. 

I am heading into StemCell soon and there will be 1 - 3 days of stem cell collection. they say it willt ake baout 6 hours and, get this, I cannot get up and go to the bathroom. They use a big machine and there is no bringing it with into the bathroom. No eating or water after midnight. In other words, I need to be somewhat dehydrated so I don't feel the urge to go pee. 

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