After Treatment Blues

[Colleens_Husband]

Dear Friends:

I have noticed that I have tried to avoid posting here for the last month or so. I was trained as a psychologist so I recognize resistance as an ego defense and I know that was what was happening with me. The thing about resistance is that it is almost always helpful to find and understand the reasons it is manifesting itself in your behavior.

So I forced myself to come here, read your posts and post myself as a way to see why I have been avoiding the subject of cancer. And I think it all comes down to the post treatment blues. Colleen has finished her chemotherapy, surgery, radiation, and she is a third of the way through her Herceptin. During the treatment phase we were pro-active. We studied, prayed, changed diets, worked at keeping Colleen healthy physically and emotionally. Basically, we did things. For a male guy type person, doing things seems perfectly natural and it is the way I want to be involved.

Now, in contrast, we are sitting around waiting for cancer to either stay away or come back and cause more grief. Sitting around and waiting for things to either get worse or stay the same is just not a very appetizing prospect. Guys are warriors. (and so are the women on this site). Warriors don't wait around and wait for your enemies to come and get you. I want to go kick some cancer butt. Unfortunately, my place as a caregiver right now is to sit, wait, and not get Colleen too riled up.

I suppose I can just try to ignore the potential wolf at the door at start to live again, but we have been in 'cancer mode' for a year and a half now and it seems like a rut that is hard to break out of.

I am pretty sure the solution is to let time pass and the cancer worries will eventually fade away. If any of the other caretakers has experiences they would like to relate, It would certainly be comforting to hear.

Thanks for reading my post.

Lee

[Patty F]

Lee
I can totally understand where you are coming from. I will finish Herceptin January 29th. I was diagnosed 1 month after Colleen. Like you said this past year and a half it has been about the treatment of cancer. Soon that will be over for me. I feel lost. Do I just sit and wait to see if it will reappear or start living again? I will be glad when all the treatments are over...but this is the new me. I don't know where the old me went.

[Bill]

Lee, you are exactly correct. We are problem-solvers, and as you stated, warriors, and it's unnatural for us to sit around and do nothing, waiting for the foe. That gives him the upper hand, and in a war/battle, you must take advantage of every opportunity and make some of your own. Like General Patton said, "He who hesitates has lost". I understand your feelings, Lee. I've been going through the same thing. You spend years fighting cancer, and it's hard, very hard, to just shift gears. A good friend of mine told me that what I've been through is just like being away at war, and then the next day trying to adjust to a routine, mundane existence again. It's the same for you. It's hard to go from being a hyper-vigilant, super-alert, paranoid, adrenaline-filled worry wart to a lay around the house and watch tv kinda guy in one fell swoop. The shifting takes time. I noticed you haven't been posting as much lately, and that's fine. You need to take a break. It's been a rough year here, and it sounds like you and Colleen are doing well. You have been a bright spot in our lives, but I think you need to take a little breather, just please make the obligatory "taking a break" post. You guys are at a good spot in your treatment and you can't keep reading about cancer all day. "A warrior with no battle to fight will invariably turn to those around him", right? One guess who said that. I still check the site daily, but after making sure I've done what I can, I paint or tend plants in my garden. Lee, maybe you should do something different. A new hobby. If you think about, your battle is nearly won, so you may now have a little more free time. Do something for yourself. You've earned it. Try to find something peaceful to do, where you have quiet moments to reflect and regroup. Life is a series of battles/challenges, one after the next. God willing, it won't be another cancer battle, but it will be something. Take this time to heal and regroup and come back strong, my friend.

[Becky]

End of treatment blues are normal, no matter how long treatment is but I will give you my perspective as it is different than some women here. That is because Herceptin wasn't available to me at first so I did the dense dose AC followed by taxol. Then I had rads. About 5 or 6 weeks after rads were over, the remarkable results from the adjuvant Herceptin trial was released (with recommendations that women who were 6 months or less from their last chemotherapy begin Herceptin immediately - this was later changed to 12 months but many women 2 yrs from the last chemo also ended up being included). Treatment blues (especially when you were Her2+ and you know that that pathology is more aggressive) were bad for me when I ended radiation. Between chemo and rads, you go to the cancer center non-stop for 6 months. For me, during chemo, I also went back every day for 10 days following treatment because I took Leukine instead of Neulasta as my WBC booster so I would go for chemo and then for 10 days thereafter (11 days), get a 3 day break and start all over again. Of course, rads is an every day event for 35 days. Then - off you are on your own! I think now with Herceptin, the Her2+ women don't get as much anxiety over it as the non Her2+ women because they really are just cut off whereas we are there very periodically for over a year. I was grateful BOTH for the Herceptin and the ability to be going to the cancer center on a very regular basis again. Then, since I started 4 months after my last chemo, if I got a couple of extra Herceptin treatments beyond the one year, I was at 2 years past my surgery date so my onc and I did that too. So when I got my last Herceptin, I was about 3 weeks past my surgery date. At that point, I was really ready to quit although it was very emotional. However, by Christmas that year (3 months after my last Herceptin) I really began to feel like the new and better me (since I really wasn't 100% while I was on Herceptin but I didn't know it).

Life will never be the way it was but that doesn't mean that life is bad. I don't think badly of having had bc anymore but I don't forget that I am a survivor either. I realize, even after 4 1/2 yrs that it could come back but every day that it doesn't improves the chances that it won't. I don't think one is ever really out of treatment if you try to exercise and eat right. But really living means not always having time every day to take a walk because your kids need you to do something, or you are going to a great party with yummy appetizers full of fat and wonderful wines (that don't treat my head and stomach so wonderfully the next morning). I am not a monk everyday:)

Everyday gets so much better. Its scary at first and you live in real fear but that goes day by day to the joy of having a second chance.

[BonnieR]

Lee, thank you for posting that. I will share it with my husband, the problem solver!
This "new normal" is a big adjustment for everyone involved, isn't it? I am still trying to figure out what to do with the rest of my life now that it has been so changed. I felt "on hold" for so long.
My oncologist said these reactions are normal because we are kept so busy and focused during treatment that there can be a real sense of being lost when it ends. Adrift.
Anyway, I am grateful we have come out on the other side. Thanks again for sharing. Keep the faith.

[schoolteacher]

Lee and all of you,

Thank you for your post. You have stated how I have been feeling since the end of chemo in December. I will continue on the Herceptin, but the question of when to stop still bothers me.

I agree with what Becky said about eating and the exercising. It will never be over.

Thanks,
Amelia

[Believe51]

Lee, get out of my head! (wink) These thoughts you relate hit home really hard. I so can relate to these feelings and the anxiety they bring. Right now I am trying to beat down the depression cancer brings and recently it has brought too much to fit on one plate. Previously I have mentioned that I like to stay in control (not 'controlling') but have tried to take a step back. Being proactive has helped me to gain somewhat of a control against this disease but much is out of our hands, this disturbs me so.

There was a brief period of time that Ed was stable and thankfully it was during the time of his 2nd cancerversary. Although I try to live each day with the least amount of thoughts towards his cancer, it is what it is. I had more anxiety and anxiety attacks during a time that peacefullness and contentness should have prevailed. Note: have not had attacks for many, many years.

It may be out place for me to speak since Ed has never really ended treatment, only a break, and may never really be out of treatment. Regardless, these feelings ring true more than I want them to. The waiting, the trying to come up with the next course of treatment, the remembering to breathe...etc, I am at my finest. I was totally stressed out when he was doing a bit better and could not understand it. Really wanted to thank you for starting this thread because it has helped me so much.

Remember that both of you are always in our prayers. Wish I could help you as much as you helped me.

Thanks to everyone this has helped me so much. This is something that when and if it happens again, I will once more be proactive!!>>Believe51

[chrisy]

Lee, I think the post treatment blues are a combination of suddenly not having anything to "do" - no warrior stuff - and at the same time having the emotions, fears, and whatever other emotional baggage has been put on the back burner come back now that the crisis if past. Post traumatic stress.

So, it's totally normal and you've really hit on some good thoughts in your analysis of it.

As for being in limbo-land, it will over time subside. You and Colleen will put this behind you and one day you'll realize you totally forgot to worry about cancer yesterday!

Most people I think find they need to pull back from thinking about cancer all the time as a necessary part of moving on with life. That is why those who stay around to continue encouraging us are so precious. They certainly pay a price and I am so grateful for them.

Heck, I'll ALWAYS be staring cancer down, but even I still need to take breaks and in fact one of my goals is to take a week off from cancer every month. We'll see how that goes! You know that saying about how to make God laugh (tell him your plans...)

Anyway, Lee, you and Colleen have been very active in your fight. Now its time for action-guy to "do" re-entry into post cancer life for you both! I have the utmost confidence in your ability to do this - with much enthusiasm!

Take care
chris

[Jackie07]

Here's the delima: Would you rather be a worrier and be diligent on catching the recurrence or be a semi-fool to trust your medical provider completely and ended up having recurrence overlooked?

My conclusion after all the medical adventures I've been through is that there's just not much we can do to steer the direction of our future.

One of the things that has helped me to stay sane is what I learned from my volunteer days back in college time. When 'transaction analysis' (I'm throwing in the terms because Lee is trained in psychology :) was popular, the volunteer center used "I am O.K, You are O.K.' for our group training.

The best concept I got from that training is to always focus on the 'here and now'. And I've also learned from the past that I need to 'trust but verify' my medical providers' opinions. There are so many factors involved when a doctor speaks to us.

Back in 1990, when my own family doctor would not support my neurologist's advice to get me a special contract to have the operation done by a Johns Hopkins trainged neurosurgeon in town, I had to fight for the deal by myself (luckily was having a very capable boss who had worked at a law firm before and got me an attorney who was just voted Best Young Lawer of the Year in Texas - we did not need her service eventually, but it gave us a good, assurance feeling and I did get my surgery done within 15 days.)

So here I am, still alive and well after two brain surgeries and two breast cancer surgeries. Having lost every job every time I had a medical procedure, I just focus on the thanksgiving part.

Within a half year, I think I can complete my training and perhaps get a [part-time?]job in medical billing. If something else happens, we'll deal with it when it comes.

[Mary Anne in TX]

Hi Lee! I do so agree with all that has been said. Whatever normal is or was (don't think I ever really visited that land), it's different after diagnosis, treatment, etc. I'm far better at the doing part than the being part of life. But I'm working on it really hard.
I have come up with a plan about the recurrence thing. I've decided to do it like being pregnant.....pack my bag and then get on with life but with changes in diet, exercise and time spent with more important stuff. When the time comes, I'll grab the bag. I do check it ever so often to be sure I have the right stuff in it.....this bag contains lots of research and more time with friends.
Best wishes for the transition!!!
ma

[vickie h]

Lee,

I'm so glad you posted this. There are many people on this site that experience those same blues, if not most.

It is something we don't talk about enough, yet it is very real and a huge part of the journey we are on. While I realize that laughter is a great healer and the advocation of it very important, so is the baring of one's fears, sadness and depression. It is through this opening up of our vulnerabilities that we create our own healing, as well as others, and is no less significant.

Your honesty here will touch all of us in unmeasured ways. Living in the scope of disease, in unchartered waters, leaves one to ponder the future and its' many outcomes, though we are told to live in the moment. Easier said than practiced...it takes much soul searching and time. You have already begun to heal by merely reaching out to all of us and i can't thank you enough for your courage. We are here for one another, striving to learn and to hold each other close as we wander this new landscape.

Much love to you and Colleen as you walk this path. Time and love are the greatest healers and this too, shall pass.

Love, Vickie