Susan’s Hair Update #1

Well, my hair is still coming out at the rate of a brush full of strands a day. I went to see my stylist and he trimmed my hair up to my shoulders. I can pull it back into a stubby ponytail but no more braids for me, sigh. I thought he might cut it super short but his advice was to chop off all the length and leave it be. My pulled back hair still looks okay and it covers my scalp, so why chop it before we have to?

Isn’t it funny how there are certain aspects of our appearance that we feel define us in some way?  Mine has surely been my hair - very thick, brown, straight and quick to grow. I miss the weight of my heavy braid down my back between my shoulders. I have a feeling that when this hair loss grows back in (hopefully) it is not going to be brown anymore. The new little strands are all silvery grey. Am I having one of those dramatic hair color change episodes in my life after a seriously ill summer and some new chemo meds for the RA? Too funny.

The good news is how well the Rituxan is working for me. I am in month 4 after my first set of infusions and the RA symptoms are very much gone. I still get tired and my muscles get sore from being active again, but that is pretty normal stuff. Hopefully I can make it through the six month cycle with no flares, which puts me into early February for the next round of medication. No need for prednisone, pain meds or a cane, how good can things get?

I am also able to hand stitch again so my photo in this post is a close-up of my almost completed La Passacaglia quilt top that has been hand basted and stitched, made entirely of Liberty Tana Lawn fabrics. I was so crippled this summer that I did not sew much, but I have been playing catch up since the Rituxan has made me feel so very much better.

Here’s hoping tomorrow is another good day!
Susan

Big Day Tomorrow

It is time to visit my hair stylist and deal with this hair loss thing. I guess I am lucky that I started out with enough hair for at least two people. The problem is that I have seriously thinned out all over and one of those poor people has lost all of their hair! Isn’t it funny how we choose our hairstyles?  I have kept my hair long and straight because that is the best style with the least fuss for me. Having to change that hair style is a bit of a bummer.

I have to smile. All summer when I was so very ill my hair looked wonderful. This fall, now that I am feeling so much better my hair is falling out. There’s justice for you! The doctors are unsure about the reasons for this hair loss.  They seem to think it is not the Rituxan and Methotrexate combination, although they have prescribed a slow-release folic acid tablet for once a week in addition to the daily dose I have been taking for years.

Pretty much any actions are too little and too late for my hair. I have lost so much that even if it does come back I will be an oddity with short on top and long hair down my back. Thus, the trip to the stylist. If my hair can’t be its beautiful self, it has to be changed. Who knows, it may all fall out before this journey comes to an end! Ugh! I posted a “long ago” picture from 40 years ago just for cheering up purposes.  FYI, the “old hair” still looks (looked) pretty much the same.

Susan

The Good, the Bad and the Hair Loss

Woke up this morning to the first snow in Monument this season. Very nice. Hoss thought the cold weather and the snow was great - just what a collie would ask for. This is pretty early for a first snow.  Wonder what that says about the pending winter season? Heard on the radio yesterday that Loveland Ski Area had fired up their snow-making machines as snow started falling in the high country. In my family, it’s time to get those snowboards waxed and ready to go!

I am still feeling pretty good after my first round of Rituxan infusions in August.  The RA symptoms are quite diminished and I am able to do many things I could not do during my biologic-fee, super flare summer. Wish I could say that all of the pleurisy issues had also packed up and left, but no. The breathing stuff is slowly getting better but seems determined to hang around for the fall months. Ugh.

I have discovered that there are some interesting Rituxan side effects, at least for me. The biggest negative is that I am losing a lot of hair every day in my brush.  This has been going on for a while and I can tell that my hair is getting thinner.  Right now my hair is fairly long and it started out pretty thick, too. Good thing! I may actually have to get about 6 to 8 inches trimmed to take the weight off of my hair and make it look more full again. I am taking folic acid already for the potential hair loss from the weekly Methotrexate and hoping that this hair attrition slows down and stops soon.

I have noticed that I blog less when I am feeling better. That is a good thing.

Hope this hair loss thing slows down soon! Otherwise it is a crew cut for me. Not sure what I think about that possibility...

Susan

Happy September

September is turning out to be a most excellent month after a crummy summer season.  As a result, I have not been blogging as much since I am actually up and out doing things, amazing indeed. I have conquered most of the items on my “short list” of things to do except for walking the collie a mile and a half.  I am looking forward to overcoming that list item in the very near future.

Funny enough, I still wake up at night with the need to catch my breath. I think the summer totally messed up my sleep patterns, let’s hope they settle down.  Otherwise I will be getting a lot of hand piecing for my quilt and online professor time completed in the wee hours of the morning.

Went to a craft fair with my buddy Michele and did not do so bad walking around all of the exhibits and carrying the accumulating purchases.  This was a great test to pass, since I have other things that need doing if I have the endurance and the strength to walk and get them done.  It is amazing how being ill for a while can impact your overall strength and ability to deal with daily tasks, who knew?

Guess it is time to say thank-you to the Rituxan for working so very well. It will be interesting to see how this medication acts over the next several months. My only complaint is that I am definitely shedding more hair in my hairbrush than I used to.  Maybe it its time to up that folic acid daily dose!

Here’s to tomorrow being another good day!

Susan

Riding the Rituxan Express

My second Rituxan infusion last Thursday was an express trip to hopefully feeling better.  Since the initial infusion two weeks ago was uneventful and I did not react to the medication in any way, this second infusion was on the proverbial “fast track”.  The drip speed was periodically adjusted upwards over the three hours that it took to get all that stuff into me.  As long as I felt okay (no headache or other odd happenings), we were going to get this infusion done in the most efficient manner possible. Amazing and a bit surreal, I must admit.

Once again, the methylprednisolone kept me up very late. My hands were not hurting so I was able to do a lot of paper piecing on my current quilt. Seems like the pattern is to sleep away the afternoon after the infusion and then be up late in to the night.  The rheumatologist is very optimistic about this new medication and my reaction to the first infusion.  Two months should be enough time to tell just how well (or not well) Rituxan works for me. So far, so good for this RA science experiment.

I have a short list of things I am looking forward to being able to do in the short term.  I have been unable to do so many things this summer, I am happy to see fall beginning as the nights cool off here and the bushes get their berries.  For me, this summer of pain and discomfort is one to let go and forget about.

My “want to do” list includes:

  1. Weeding and planting in my flower gardens
  2. Paper-piecing rosettes on my quilt project  
  3. Walking the dog every day around the ponds (a distance of 1.5 miles)
  4. Taking the stairs with no shortness of breath
  5. Carrying in the groceries myself, more than one bag at a time
  6. Walking, walking, walking
  7. Sleeping better and longer every night 

Not too ambitious of a list, is it?  I sure hope I can achieve these things that I used to take for granted.

The best thing is that I may be able to get my hair trimmed.  When I got sick, I decided I would not have it cut until I was feeling better.  Let’s hope I get there soon since my hair is almost to my waist – it is kind of like wearing a carpet down your back. While the rest of me took a beating from the pleurisy and the RA symptoms this summer, my hair was flourishing and grew like crazy. At least it didn’t turn white or anything. Go figure.

Susan

Now I’ve Gone and Done It…

Took a little trip to the Colorado Department of Motor Vehicles (DMV) yesterday with paperwork in hand from the doctor authorizing a handicapped-parking placard for my car. Ugh.  I am not sure what was more upsetting – having the actual permit in hand or realizing that now I have something more in common with my 83-year-old dynamo of a mother since she has a handicapped parking permit, too.

Somehow this feels like a checkmark in the “lose” column to me.

Acquiring this parking placard came about after a recent trip to the mall and a very slow, breathless walk from the car into the mall itself. This was a not unexpected experience as the pleurisy and its annoying symptoms continue to hang around. When I visited my family practice doctor on Monday for my “pleurisy checkup”, I mentioned this laborious walk into the mall and how challenging it was to go from point A to point B when those points are not that close together. End result: the completed and doctor-approved application for this parking placard and my subsequent trip to the DMV. 

Hopefully, there will be many good days and this placard will not be necessary. I have to admit; on the bad days, being able to park closer to my objective will be a wonderful thing. Admitting the need for something like this is where it gets more complicated. Am I giving in to RA by recognizing and acting upon these cyclical physical limitations? The grownup me says “not at all” but the younger me says “loser!”  I imagine this is a situation many RA science experiments have found themselves in. How did you deal with it?

My first Rituxan infusion has resulted in much less inflammation and pain, which is a big help. My second infusion is next Thursday and I am hoping things will get even better still after that. The pleurisy’s slow disappearance is really the bigger, ongoing issue. I still have some pain on the right side and shortness of breath if I walk too fast or try to carry something heavy. Perhaps the new parking placard will be used every now and then versus used every day.

Here’s hoping tomorrow is another good day!

Susan

An Infusion for Susan

Well, my first Rituxan infusion went off without a “hitch in it’s giddy up”. After having the infusion postponed for two weeks, I was worried it might get deferred again yesterday. However, that was not the case. After four hours hooked up to the IV, I was ready to get up and move around. Once again, I had my technology, my books, my snacks and a bottle of water neatly packed and ready to rumble. This time everything came in handy to pass the time.

The nurse started out the IV drip really slow, and treated me with all of the additional reaction drugs I was expecting – Ibuprofen, Methylprednisolone and Benadryl. After about an hour, she turned up the drip a bit as everything was going very well and I was not reacting to the Rituxan in any way that I could tell. The only eventual reaction that I had was to the Benadryl.  It made me fall asleep for about an hour or so.  Sure hope I didn’t snore!

I slept away my afternoon and stayed up too late yesterday evening as a result.  The good news is that today I really feel good.  The inflammation and pain has subsided and I can move around much more freely.  The shortness of breath and rib pain from the pleurisy is still here, though.  Let’s hope that continues to fade away over time. My second infusion is two weeks out on a Thursday and then I won’t have another for about 6 months.  Now that is an infusion schedule I can live with.

Hoping tomorrow is another good day (and I think it will be!)

Susan, the RA Science Experiment