Haircut

Today, I had my first post chemo haircut.  My hair was needing a little shape so I headed in to see Lori for a cut.  I still haven't decided how much "growing" I will do but am happy to now have a semi-hairstyle.  It will be perfect for the warmer weather.

Flush Number 2

Last week, I had my second port flush.  Deja Vue  "Today is my first official port flush. My cancer center schedules them every 8 weeks. Hopefully, that means the next port flush will in warmer weather."  Unfortunately, that was not the case.  A winter storm was headed our way so I actually went in a day early for my port flush because the forecast was calling for snow, sleet and ice. 

The port flush isn't a bad experience at all.  The actual procedure is quick and painless.  My only complaint is both times I've developed jaw pain following the flush.  This time I also noticed a slight bruise on my neck. Not a big deal at all and not too surprising as I'm still bruising quite easily.  Blood work and my follow-up oncologist appointment will be coming in mid April and I'm once again hoping for warmer weather.

The Road to Recovery

My apologies for being absent from the blog for so long.  It doesn't seem possible that it has been 7 weeks since I posted; maybe, that is because I've been stuck on the road to recovery.

Post-treatment recovery is like a long car ride to normal. “Am I there yet?” keeps running through my brain. Plus, will I recognize it when I arrive. Improvement is like a rest stop where I can once again ask “Is this the new normal?”

In the last month, I’ve had major improvement with the hot flashes. Instead of many a day, I am now going days without hot flashes. Does this mean the chemo-induced menopause is coming to an end? I certainly hope so. It is so nice to sleep through the night and not wake up in a puddle of sweat.

My energy level is still not where I want it to be. A dog walk leaves me exhausted and weak. I’m still falling asleep most nights well before 9pm and 8 hours of sleep just doesn't feel like enough.  I’m hopeful this isn’t the new normal. I want more energy.  I want to be back out running and just a little closer to my old self.

This week, I returned to volunteering for the Probate Court.  Maybe by returning to normal activities, I can trick my body into feeling normal.  You know, fake it until you can make it :-)

The worst part about the road to recovery is the speed bumps.  Life before a diagnosis of cancer has the same speed bumps.  Maybe it is a sore throat or pain in one spot or the other.  Before cancer, you just ride over the bump, no big deal.  After cancer, these bumps leave you wondering, is it more than just a sore throat? Is that pain something more than just pain? 

For now, I will celebrate each good day and focus on the glimmers of good in each bad day.  Most importantly, I will keep my eyes on the road to recovery and hopefully soon I will spot the express lanes.

Diminishing Side Effects

I’m happy to report that my chemo side effects are slowly diminishing. Most days the only ones that are still noticeable are the fatigue and the hot flashes. I’m now eight weeks out from my last chemo and have had to start shaving my legs again and have a decent amount of hair on my head. If it wasn’t so cold outside, I could get away with calling this short hair-do a personal choice.  It will be difficult to avoid coloring my hair.  I have a strange patch of dark hair right in the front and the rest of my head is a mix of gray and dark.  A friend who is growing out her chemo hair said her hair initially came in very gray and as it grew the color returned.  I'm going to try and see what happens before I rush back to Loreal.

I still have days where my family calls me on the chemo brain although given the chemo-induced menopause it also could just be hormone (or lack thereof) brain. I’ve read online that chemo-induced menopause can be temporary. I guess I’ll find that out eventually.

Today is my first official port flush. My cancer center schedules them every 8 weeks. Hopefully, that means the next port flush will in warmer weather.

If I wasn't so tired, I'd be doing a happy dance!

Well, my post treatment doctor appointment was Tuesday morning and I'm just now blogging about it.  That should tell you something.  Not that the results were bad but that I'm still enduring some intense fatigue.  The good news is that my CT scans from the end of December look good.  No evidence of the masses that were seen in August.  I will see my oncologist in April and if my blood work is good with no increased cancer markers, I won't need repeat scans until the summer.  Personally, I'm hoping for PET Scans.  The prep and procedure is much easier than the CT Scans.  Really, they aren't fooling anyone when they try to create pina colada flavored barium.

A little bit of trivia about Barium.  We learned this week watching "Factory Made" that barium is used in high end bowling balls to help give them the unbalanced roll need for those nifty looking curve balls.  It came as quite a relief to Gary who has tried for years to get the cheap old bowling alley balls to do that.

So now I'm officially a lymphoma survivor.  Right now it feels good but not as good as it will feel when I'm done with all the chemotherapy side effects.  For lymphoma patients that seek out my blog for information, right now the main side effects are fatigue, peripheral neuropathy (which still seems worse in my right hand and right foot), a little chemo brain and hot flashes from the chemo-induced menopause.  I actually think the hot flashes and fatigue go hand in hand because it really is hard to get a good nights sleep.  I know a lot of cancer patients who add Ambien to there medications but right now I'm trying to avoid it. 

I've been researching post treatment recovery and understand that it can take months to fully recover.  My white blood count was a little low and I know that can be causing some of the fatigue.  Right now I'm trying to aid the recovery with exercise, nutrition and daily naps.  I will let you know how that goes and until then thanks again for all the light, love, warm thoughts and prayers.

Sharing this from my friends at Patients Against Lymphoma

Feel free to print this out and give it to an especially close friend who can share it with your other friends.
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How to Talk and How NOT To Talk To A Friend Who Has Cancer


If you feel nervous about talking with your friend, here are some pointers from cancer patients.

Be yourself and don’t be afraid. 
Your friend doesn’t expect perfection. Some people have a knack for expression, some people are lost. Your friend sees that you care and that you are doing your best. A warm hug can communicate everything.

Don’t push advice. 
You probably don’t know enough about your friend's case to really be useful. It can be tiresome and confusing to hear recommendations that may contradict the advice from one's oncologist. Each case is different. What works for one patient may not be appropriate for another case with slightly different features. So no need to say, “My friend Paula had your cancer and she said that her doctors recommended chemo every week…”

When in doubt, email an offer of help or companionship.
Unreturned phone calls can be a burden on your friend. Also, the phone ringing might wake him or her up from a much need nap after a sleepless night or a difficult treatment.  Or a call might force your friend to think about cancer during a time when he or she is taking a mental vacation. Always end a voice message or email  with “No need to reply; I am just thinking about you.”

Listen more than you talk.
You are there for your friend, the cancer survivor. Give him or her some runway to talk about whatever’s on their mind …an annoying insurance problem, an insensitive staff member at the oncologist's, a funny card they got, an aching back, an old car that isn’t selling, the kids, their parents, their spouse...anything.

Don’t force the cancer conversation.
If she’s trying to talk about her husband’s nasty boss, and you came to get the latest update on treatment, stick with the nasty boss stories. Cancer isn’t the only thing going on your friend's life.

Don’t expect her or him to follow up on every suggestion.
Many people will suggest that the friend with cancer call another friend who had cancer or read a new article about an ongoing clinical trial or natural remedy. These can be very helpful, but can also feel like another thing for the To Do list. Just pass the info along in a card or email and leave it there.

Focus. Take off your coat, sit down, turn off your cell phone. If your friend starts to open up and vent, stay with them. It helps to tell your friend up front how long you can spend so she or he doesn’t worry that their mood sent you packing.

Don’t rush your friend through the hard stuff. Your friend is sick, scared, bald, uncomfortable, and tired. Try not to quickly stifle these truths with platitudes like, “You’ve got to stay positive” and “This is going to be over soon” or "It will be OK." Let your friend complain and cry and feel a little self pity before you start to help her or him put themselves back together again.

Mirror your friend's feelings to show you understand, such as, "It sounds like you feel overwhelmed and low right now. That's got to be normal. Nobody can keep positive all the time," or "That must have been frustrating." Whatever is appropriate and real. Then give your friend some time to express how they feel. By letting the person feel it and saying something supportive in response, rather than contradictory or "balancing" you can help more. It's like driving into a skid in the rain. Going with the flow and turning into the skid is the best and fastest way out and back into control. Contradicting or trying to force the bright or positive perspective only makes your friend feel isolated and unheard.

Respect your friend's experience. Don’t say “I know how you feel” unless you actually do. Don’t say “My friend had the exact same thing and she’s doing great.” Every cancer case has unique elements.

Skip the bad stories. Your friend's mention of cancer is not your cue to launch into a story of someone you knew of who had a horrific experience. Just as you shouldn't be the cheerleader of denial (Stay strong. Attitude is everything. You're gonna be fine!), you shouldn't be Debbie Downer full of dismal news, either.

For Heaven's sake, don't ask how long your friend has.  Stage IV blood cancers are often reversible and many stage IV solid cancers can be managed.  This also goes for cards from estate lawyers and links for do-it-yourself wills!



Adapted from Circus of Cancer

Final Round of R-CHOP and Post Treatment Game Plan

Final Round of R-CHOP with the great staff of GHCI!

So it is now Day 3 post last round of chemotherapy.  As has been the case with the last few rounds, I've spent most of the last few days sleeping and semi-watching dvds.  Side effects seem to be the same, no better, no worse.  More hot flashes but I have a feeling I may just have to get used to those. 

I wish I had more energy for a nice long post but maybe in the next few days I will get there.  I did want to update you all on my post treatment game plan.

On December 30th, I will be having CT Scans of all the areas where there was cancer: Neck, Chest and Abdomen. Plus, my oncologist wants a post treatment baseline mammogram of the breast. I will do a follow up with him middle of January and if blood work, scans and mammogram all look good, we will just do blood work every 3 months and PET Scans every 6 months for the first 2 years. He wants me to keep the port in for at least the first 6 months and I told him “I love that thing and I have no problem leaving it as long as possible” .