Relapse 101

[SarahSmile]

The beautiful and wise Kim (izzydoesit) asked me to post in a relapse 101 thread my response to Colin about his wife Berni's fear of relapse.

We've got 101 threads going on a couple of treatment-related topics: chemo, hospital stays, radiation; but we don't have any sort of concentrated place in which we talk about that elephant in the room that is our fear of relapse. What I said to Colin was this:

As someone who actually HAS relapsed, I can relate to Berni's despair. This relapse has affected my relationship, our finances, and the sense of security we had in our ability to plan for a stable future. In my very darkest of private moments, I've thought that if it came back again, we might both just be better off if I just called it a day and said, "Enough." I know it must be absolutely terrifying for Berni to face the inevitable risk of going through this again with two little children in her care. I know that immediately following those dark thoughts of mine, I knew I couldn't do it to Lorraine, and I couldn't leave her with the sole care of our 8 animals. It seemed too selfish to me. Instead, when I'm going through the hardest parts of this transplant process, I focus in my mind's eye on Lorraine's face, and the faces of all of our furkids....because they're depending on me to fight as hard as I can.

Berni's not in the midst of a relapse, but she might as well be for all the paralytic fear she's experiencing. I do think she would benefit from an antidepressant and someone to talk to privately, with the former to warm the waters into which she would dive with the latter. I think it sounds like a necessary step along the path to her wellness, because she's struggling.

As for the fear of relapse, well for me there is a division between my pre-relapse fear and my post-relapse fear. Before actually relapsing, I didn't have any real fear of it post-ABVD until I started getting false positive PETs and inadvertently finding what I mistakenly thought was swollen node on my collar bone while massaging my neck. (I was not a hunter or poker.) The positive PETs scared me, and brought home the possibility of relapse. But still I just shoved those thoughts aside and concentrated on positive events and changes in my life until a subsequent routine scan that showed I actually HAD relapsed. Then the world came crashing down....but you rise to the occasion, collect your wits and gather your strength. You just do it, as you did the first time, because you have no choice. Yes, there are dark moments, but in my case they were fleeting, since I was able to recognize that they were leading no place productive and they didn't reflect the person I wanted to be in this world. I think also that the "choice" of not fighting again is much more likely to be present when you're thinking about it theoretically than when you're actually in the throes of a real relapse.

My post-relapse fear is a different thing altogether. I now know with absolute certainty that I am not safe from relapse. My life has shown that to be true. So I, at least at this time, have this sense of riding a magic carpet that has no firm surface upon which to land. I'm just riding, and trying to stay balanced -- and it is a lonely feeling in a sense, because noone around me can fully appreciate my perspective, as much as they'd like to. I can only hope that with time, I'll feel more grounded and less up-in-the-air. I expect that with each clean scan (please, let it be!) I'll get a little closer to earth.

I guess I would say to Berni that her chances of relapse are so slim, given the overall experience of HD survivors, but if she were to fall into the ranks of those who do, I believe that she possesses within her the fortitude and LOVE (love of herself, love of you, love of her children, love of LIFE) to face it head-on and go through this process that others have -- and with success! I know that I gain SO much comfort from the knowledge that there are other perfectly ordinary -- and yet extraordinary -- folks who've walked this path before me and came out on the other side. They give me strength.

And if I am to have cancer, whether it's round I or II or even III, I can pass the time after diagnosis in the process of dying or in the process of living. It's pretty simple, when you break it down. I choose life.

A fearful life is one that is not fully alive, not fully present or fully realized...regularly present, innocuous lymph nodes or not...and both Berni and your family deserve more. For what it's worth, I do not agree with that doctor's advice to feel her nodes weekly. I think that keeps her in a constantly fearful state and precludes any sort of moving on to a healthy, hopeful life. It's a constant testing....it's like an alcoholic lining up his favorite beverages every week so he can say to himself, "Yep, I'm still in control!" Rather, he could fill his life with non-alcohol related activities that build good health and a positive state of mind. One course of action feeds the negativity and fear, while the other feeds the positivity and hope. That's my thought, anyway.

My very best to you and Berni, Colin. I am sorry you both have this still to contend with, and I do recommend that Berni get some support in moving past this chapter and into the next.

At this writing, I've done all the work leading up to my SCT and am headed back into the hospital for high dose and my SCT day after tomorrow. I will share here a few thoughts on my relapse and invite other relapse survivors to share their wisdom and experiences with life after a second diagnosis. I intend to come back and share more after my transplant....when I'm a bit wiser myself!

To the reader who's not relapsed and is in the process of completing or has successfully completed first line treatment, I want to say that any fear of relapse you might have is perfectly normal and a natural part of the process of getting past a cancer diagnosis and into wellness. Self-preservation is a good thing! But don't let the fear rule or overtake you -- give yourself permission to feel the fear but don't succomb to it altogether. You aren't/didn't go through all the yuck of your treatment to come out the other side ruled by fear of relapse! Enjoy your life, enjoy your freedom and your body and all the love and gifts in your life....focus on them and not on something that is probably never going to happen, because to do otherwise is a monumental waste of your time, energy and LIFE! Let the inevitable anxiety come, work through it with your rational mind, and then let it pass. Do not hold onto it or chew unproductively on your own tail as you go around and around in the same fearful circle.

To you who have unfortunately heard the awful word that it's back or that your first line treatment wasn't successful, go through the unavoidable grief and anger and then set your minds to action! You don't have the luxury of lying on your fainting couch, crying "Why me?" Not for long, anyway! You just don't have the time or energy to waste on that. Hunker down, inform yourself, seek out the guidance of others here who have been through an SCT before you and take it one milestone at at a time. To look at all that you will experience throughout the entire process can be overwhelming and daunting, so break the whole deal up into manageable pieces and celebrate each milestone along the way!

You will have several months of treatment before you go into the hospital...and this is a good thing. A lot will transpire over these months and all of it is designed to get you well, so try not to get too frustrated by the passage of time; it's all happening as it should and all of it is for your own good, so be patient with the process. Further, one of the happy biproducts of all of this lead-up to the SCT is that you have some time to mentally process this experience and it's place in your life, so by the time you're about to go into the hospital for your high dose and the transplant, you'll be better prepared emotionally and mentally to get through it. At least that's how I feel now that I'm headed into it myself. I got to move from disbelief to grief to anger to acceptance to resolve to drive and into a strange peace. Fear rears its ugly head regularly, but I knock it down by having a dialogue with myself about exactly what I'm afraid of, speaking to myself as if I were talking to a friend that I wish to comfort and put at ease. I cannot stress enough how important it is to remain positive and look for the humor in all of it, and to be gracious and friendly with all of the medical staff who give you treatment and care along the way. They are your allies, as are the chemo, the radiation, the Neupogen, all the scanning machines and needles....ALL of it! Be grateful for all of it, and for the technology which exists to save you, for you are LUCKY and BLESSED to have access to it.

If there were to be only one message I could convey, it would be this: DO YOUR DAMNEDEST TO STAY POSITIVE!!! That might sound corny or trite, but it is absolutely critical to the mental health of you and your loved ones, to the nature and tone of all of your days leading up to your SCT, and, I believe, to the outcome of your treatment. Energy breeds energy, and if you're putting out positive energy it WILL come back to you! I literally wake up every day and make up my mind that it's going to be a good day. I say, "I'm going to LOVE today!" And I usually do! If you feel like crap from the chemo or radiation or the constant sticks or WHATEVER, remind yourself that it could be worse, and that time passes....because it always does. You might feel like crap now, but it's TEMPORARY and it is, unfortunately, a requisite biproduct of the process of getting you cured. It's all a means to an end, and you have it within you to get through this and so much more. Just focus on the things you love: your family, the blue skies above, the feeling of the sun in your eyes, your dog's unabashed love for you, the feeling of cool water on your skin, the embrace of your partner.....focus on what is present rather than that which is absent, and on the good things not the bad or painful things. Because the good things are lasting and the bad things are NOT. Unless you will them to be with negative thinking. Life is good and it is precious, and you are alive NOW so don't squander it with fearful or fatalistic thought.

Get through the hard and scary parts with visualization, positive self-talk, beautiful imagery, and distraction. Visualize your tumor cracking and crumbling under the radiation's beam, tell yourself that you're strong and that in a half hour -- or two days -- or three months this will all be over, see yourself in your mind's eye floating in a gurgling stream beneath the warm sun and fragrant green leaves, listen to music which calms/soothes/invigorates/inspires/strengthens you or speak silently to yourself or God in another language. Do whatever works to get you through the current challenge and then celebrate your strength and resourcefulness by sharing your love and humor with those you love.

Stephen Covey speaks in his book, The 7 Habits of Highly Effective People, of the importance of beginning with the end in mind. I recommend thinking purposefully at the onset of your treatment about who you want to be in this experience, whether it's coming after your first diagnosis, or second, or third! Who do you want to be in your life and in this world? Set yourself to respond to the upcoming challenges as you'd wish to, and use that as your sort of internal compass. You won't be perfect -- noone is! -- but I dare say you'll get through it all with fewer regrets if you make up your mind at the onset that you're going to be someone you're proud of in the face of what will probably be the greatest challenge of your life.

There are all sorts of practical tips that could help, but I fear that I've forced you all into temporary comas with this crazy-long post, so I'm going to close here and invite all others to pipe up with their own relapse experiences. I know I would have benefited greatly from a thread like this. Veterans, share your wisdom!!

One last thing before closing: if you are facing a relapse, know that you WILL get through this! You are so much stronger than you realize, and this is achievable. The people who've travelled this path before you are just like you: ordinary folks who were minding their own business when they got a headsmack that forced them to step up and be greater than ordinary life requires. They did it -- I'm doing it -- and so can you. I promise.

[ag2006]

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[SarahSmile]

Anne, what happened to your post? You offered some great stuff!

[SarahSmile]

Oops! I meant to share this great resource on SCTs. Not every single procedural/timeline detail will apply to the treatment delivered at your facility, but it gives an EXCELLENT overview of the process and provides an enormous amount of really helpful, relevant info for you and your caregiver(s). Be sure to check out the stem cell video and the glossary, too!

[RayNat]

Additional thoughts from experience:

-- get up, let nurses do your bed, get dressed and walk at least a mile each day - avoid being lazy as it drags you down; may be ask to see a physical therapist - they can give you a quick program to do every day to not loose muscle mass.
-- listen to your body; nurses are ready to load you with meds but they all have some kind of side effects so it's a visious cirlce - the more you take the more you need and it never ends thus you stay longer in the hospital; I found less drugs was better for me - I preferred to be aware and awake and in control.
-- Do the salt and soda not every 2 hours as they suggest but every 30-40 mins as the folks here say -- it really helps better than anything else. Brush after every meal. Depending on the protocol (BEAM is the standard) you may have Melphalan - it kills the mouth and the throat. My nurses suggested I sucked on ice 30 mins prior to Malphalan and during and 20 mins after to protect the mouth. I think it helped.
-- Zofran is great (for nausea) but you may need some extra as you progress -- Ativan was great as it did multiple things (helps with sleep, tummy is peaceful, emotions are good and nausea is down)
-- don't eat too much at once, or don't eat at all (all pros: no diarhhea, no vomitting, loose weight etc); keep up with proteins, dairy is not the best choice. I didn't eat for 8 days straight and was pleased to loose 15 pounds.
-- stay positive - consider it your chemo resort and a get away from the world - read, sleep, watch movies - relax; too much company can easily tire out... after all, it will fly by before you know it. And it's once in a life time lucky ticket .

[SarahSmile]

Yay! A vet checked in! Thank you, beautiful Natalie.

[ag2006]

**I made an update and just noticed that I inadvertenly deleted my previous posting above, so here it is again below. Remember, it is BASED on my personal opinion and experience. Always consult your physician. Incidentally, many of these suggestions can be found in many cancer survivor books**

When I first fought Hodgkin's Disease, everything happened so quickly and before I knew it I was receiving chemo and then it was six months later and I had completed it. I had no idea where the time went. I was still very busy working away and also working on projects that caused me a lot of unnecessary stress to say the least. I kept going at my fast paced lifestyle to help and please everyone but myself. In doing so, I wasn't taking care of me. I was actually neglecting myself and in a way, I was in denial of the first diagnosis. I thought if I worked hard and ignored it, it would go away. I was putting myself into unnecessary stress and unknowingly causing myself more harm than I imagined. It wasn't surprising to me that I relapsed 3 months after my brief remission, so my MAIN advice to relapse patients is to minimize stress and take it easy.

Below are just some things I personally recommend that have put me in remission:

1. Consult a top medical team at a cancer center, not a community hospital, if possible so that you can take advantage of their full services. It's important that you have all the medical resources all in one place (oncologist, radiologist, nutritionist, sociologist, psychologist, therapist, support groups, etc.) so that you are more apt to use them. If you feel you need to change oncologist and get second and third opinions, don't fret ....do it. If this is a relaspe, I suggest you also see a therapist for support. They can guide you and provide you with support and advice.

2. My main thing is stress - Minimize it. Stress is a big factor in making and/or bringing upon illnesses and diseases. Think about what your life was prior to the relapse. Is there something you can change that causes you stress? Is there a toxic person in your life making things worse for you? When you're ill, you need to surround yourself with those who are supporting you and putting your health first. Think about this one and make changes accordingly because as serious as cancer is, a relapse is even more serious. When you are stressed, you lower your immune system which make you susceptible to illnesses and diseases such as cancer, so try to let go of emotional baggage and negative thoughts as much as you can. Consult a therapist, a trusted friend, pastor, group, etc. for support.

3. I suggest you find books or CDs on positive thinking, guided visualization, mediation, yoga, exercise, health, nutrition, emotional health, etc. Oncologists know how to kill the cancer, but they don't always know how to treat the human behind the cancer. Arm yourself with all the knowledge you can, not just cancer knowledge but overall health, body and mind knowledge and play an active role in your treatment and recovery by doing your research and doing what you can from your end to beat cancer. You need to muster up all the strength and will to fight cancer. This is something doctors cannot do for you. It's up to you. YOU need to draw deep from inside and find your inner strength through guided visualization and positve affirmations. Don't give up on yourself and don't leave it all up to your doctor. Find that will!

4. Have a pro-active, action-oriented caring family member or trustworthy friend go to every appointment of yours and any hospital stay you may have. Don't do this alone. When you are weak and vulnerable, you need someone to be your advocate to take care of you and ensure you are getting the right treatment, to ask questions when you cannot and take notes.

5. Keeping hydrated is so important - drink you water! In addition, eating right, exercising and resting is also important, especially when you're fighting the cancer battle. If you're on a junk food or sugar diet, consider seeing a dietician with your doctor's approval. Junk food is loaded with man-made preservatives and sugar attracts cancer cells! Ask a nutritionist or physical therapist for support and advice -- ensure your doctor knows that you are on an exercise/diet program.

6. Slow down a bit whether it is work or other responsibilities that wear you down and seek help from supportive friends or a caring cancer support group. If you can take time off from work, do it. Some people can work part time and others like myself are too fatigued and too ill to work. This is not the time to be a hero and try to do it all. It is time for YOU. I've seen many cancer patients continue with their fast paced lifestyles trying to prove that nothing is wrong, only to relapse again. I know because I was also in denial and that denial could have been the factor in my relapse

Below are some books I personally recommend:

* Getting Well Again by O. Carl Simonton, M.D.
* Heal Your Body by Louise L. Hay
* Fighting Cancer From Within by Martin L. Rossman, M.D.
* Guided Imagery for Self-Healing by Martin L. Rossman, M.D.
* What to Eat if You Have Cancer by Daniella Chace

I am now in remission and in spite of my relapse, I feel strong and positive. Yes, I was angry that Hodgkin’s came back, but I felt I was personally and partly responsible because I did not take it as seriously the first time around or armed myself with all this knowledge. I expected my doctor to do all the work and that's it. With the relaspe, I got stronger and decided to fight harder. I also put myself first and made major changes in my lifestyle. Now because I have made those changes in my life, I am much happier and confident than ever regardless of what I have been through and have learned so much that I wouldn’t have learned in the first place. I don’t want cancer again, but because of it, I am a stronger and better person as you probably hear other cancer survivors say.

In short, this is the time for YOU to work on getting well and very importantly, stay positive. Take it one day at a time, remember you come first. Be good to yourself and don't lose yourself even if it gets tough because it will get tough. Gather strength from all those who love you, but also remember love yourself, first and foremost. A relapse is a very serious thing and you need to fight stronger now, but continue to stay positive. Soldier on and fight -- this is a battle you need to tell yourself you must win, so arm yourself with all the ammunition needed to win.

This is much longer than I expected, so I will stop now and if I think of anything else, I will post it. I think Sarah covered a lot and provided so much valuable information that will be useful to relapse patients. Thank you for allowing me to post my experience.

God Bless,

Anne

[ag2006]

Bumping this to the top for relaspe patients.

[SarahSmile]

I wanted to share here a link to a thread from the time of my diagnosis, when I wanted to hear from other SCT'ers. In it, you'll find a world of SCT-specific wisdom as well as general wisdom related to relapse in general.

[ag2006]

bumping up