Update on Carrie (CMP) 6/24 Surgery

[cmp]

I am continuing to get stronger every day, and (never thought I'd say this) am not needing the pain meds nearly as much. And I think I logged a full 2 miles between all my walks yesterday, which felt very very satisfying. (Unfortunately, today it is dismal--cold and rainy--so unless I stoop to mall walking, I'm kind of housebound).

The facial neuralgia still comes and goes--quite painful at times, hardly noticeable at others--so I'm hopeful it's just the trigeminal nerve having a hissy fit over being poked and prodded at, and will resolve with further healing. I go in on Monday to get my sutures out (I've been having lots of fun wearing all my colorful vintage scarves--I'm a vintage clothing/jewelry dealer in my "other" life--but boy am I looking forward to being able to shampoo again...)

The bad news is that my mom is back in the hospital, with a blood clot in her leg. My husband took her downtown for her 3 week oncology checkup yesterday (I tried to warn him that her checkups are NEVER routine--something always comes up, and the day invariably ends up being at least a 9 or 10 hour long one, but he still went off planning on being home in time for dinner at at 6... Guess that's what's known as finding something out the hard way...) They admitted her to Beth Israel Deaconness (where she has been receiving her care) and did a CAT scan of her head late last night just to confirm that the clot hadn't gotten anywhere dangerous.

She will need daily injections of bloodthinner indefinitely. They sounded me out to see if I'd step up to the plate (when she had a lung catheter put in in the fall which needed to be drained 3X/week, I was more than willing to be trained in the technique and continued to do it for her for almost 4 months). This time, the thought of going daily to her ALF, which is after all a potential source of infection till I'm really back on my feet, didn't seem so wise (not to mention the fact that I'm also not driving yet!), and I also feel so woozy/tired sometimes I wouldn't want to be responsible for showing up at a specific time to administer an injection in the right location (I'm not exaggerating when I say that, in addition to the nap attacks, I get major bouts of loopiness--keeps my 21 year old in stitches, but I wouldn't want to be on the receiving end of a hypodermic with a goofball such as I frequently morph into on the other side of it...)

So I think when the Visiting Nurse Association (they are affiliated with Hospice care) say they have exhausted the number of times they can come and do the injections as part of her Medicare coverage, I'm going to ask my mother to just bite the bullet and pay out of pocket for them to do it. (She is more than able to absorb the cost financially...)

that's the basic scoop. Only other thing worthy of note (if not exactly surprising!) is that, for the first time in years, I have NO plans to celebrate the 4th of July. I usually march in the local Sudbury Parade with the local town Democratic Committee (various state senators and congresspeople often walk with us, as well as any new candidates we are backing, so it's a lot of fun), but the route is really a bit too long. And even though I ADORE fireworks displays--there are some truly amazing ones around here--I think I'll leave the crowds and earsplitting acoustics (plus a good chance of lightning and/or pyrotechnic-dousing flash flood) to the haler and heartier red, white, and blue junkies out there.

(I AM dressed all in red white and blue, BTW--couldn't resist just a wee bit of kitsch!) I know my mom will get a kick out of that when we bring her home.

Anyway, my very best wishes to everyone for a super-Happy (and even Healthier!) Independence Day!

Carrie

[Debbi]

Hi Carrie-

And Happy Fourth of July.  Glad you are a bit better and stronger each day.  I am, however, very sorry to hear about your mom.  It sounds like your decision to let the HHC take care of her daily injections was an excellent choice.  I can't imagine trying to take that on when you are so recently out of surgery yourself.  As you say, the fatigue alone would be a problem, never mind the loopiness.

I also think you made a wise choice to opt out of the fireworks.  You can always tune in the NYC fireworks on TV and then you can turn down the volume and avert your eyes if it's too much!     That's what I plan to do - can't even think about the full body experience of live fireworks right now.  Maybe next year...

I'm so glad you are doing well, Carrie. 

Debbi

[Pooter]

Carrie -

It was great that I logged in and saw your update.  I'm sorry to hear about the other issues with your mom.  Keep the faith and keep moving as much as can, but don't over do it.  It's great that you're feeling stronger and stronger!  Continued healing, my friend.

Brian

[lori67]

Carrie -  I think that was a wise choice to miss the parade and fireworks this year!  I have a feeling they'll have them next year about this time!   

I'm sorry to hear about your Mom.  Did you try checking with the County Health department about visiting nurses?  I know it's different depending on where you live, but you may be able to get a public health nurse to help your Mom with her injections.  Or is it possible to let your 21 year old do them?  When we lived in Virginia, a good friend of mine had a sister with MS who lived in Assisted Living down the street from me.  She needed in injection every other day and her sister lived clear across town.  I told Sherri that'd I'd do them for her since I was right down the street, but she decided that since I wouldn't let her pay me to do it, she'd let my daughter - 19 years old at the time, learn how to do it and pay her.  So, we had a nurse from the facility show her how to do it and then I went with her the first few times until she was comfortable on her own, and then she was fine with it.  Just an idea.

How is your son doing at camp?

Lori

[wendysig]

Carrie,
Glad to hear you are doing so well but I was sorry to hear about your mother.  Lori had some great ideas and I hope they work for you.  I hope your recovery continues to go smoothly.

Wendy

[Tamara]

Let me add my voice to those wishing you continued well-being in your recovery.  It's good to hear from someone who's doing well!  Hope your mom is OK too...

Tammy

[Shiva]

Hi Carrie

Iam so happy for your quick recovery. Your mom will also recover soon. Dont worry. You & your hubbie need some rest.

Shiva

[cmp]

Hi all--

Sorry I haven't been around for a few days. The past few days have been HUGELY tiring--seems like taking care of the odds and ends regarding my mother's latest health development (the endless calls to make sure records from the hospital were sent to her PCP and assisted living facility, that the Visiting Nurse is in the loop, that there will be transportation--either my daughter or a free senior's van--to get her to her followup appt with her PCP next week, as my husband is already taking her downtown the day before, etc etc etc)  is taking WAY more energy than it should. (I understand why logically, but that doesn't make it any less frustrating that sometimes when I set out to make 3 "quick" phone calls, I cannot get through them without crashing for a nap in the middle!

It turns out my mother will need to be on the Lovenox injections for the rest of her life (Coumadin is not a safe option for her, for a variety of reasons, even though an oral medicine that could be brought to her with her other meds would be "easier" to safely administer). She has learned to do the injections herself--the visiting nurses would only teach her (or someone else) to do it, but not continue to administer the shots without it costing something like $100 bucks a pop. So the aide at her ALF brings her a syringe with her morning meds, and she injects herself near her belly button.

Now the next issue to wrestle with is her insurance coverage for the Lovenox, which is apparently quite expensive. She doesn't have Medicare B, so no help there; I have to investigate how much help we are going to get from her secondary insurance. (She's on SO many expensive meds at this point, claims are starting to bounce, and I feel like I may begin bouncing too, as I try to appeal some of the nasty decisions being made...)

On a more positive note, I got my sutures removed yesterday, and washed my hair this morning. Yippee! (I have been such a wimp about the incision--but today I took a good long look at it, because I wanted to make sure I knew exactly where it was and not run my brush over it my accident!). I will post photos of it (pre- and post-suture) when I get a chance, because it may be informative for folks to see what a repeat retrosigmoid looks like (apparently they lengthened the incision a bit...)

Also, Dr Martuza prescribed Neurontin to help with the facial nerve pain I've been having (trigeminal--jaw/upper cheekbone mostly, sometimes temple and scalp) but I think I will probably not take it (researched the possible side effects and got duly freaked out...) He says the pain is most likely a sign of the trigeminal nerve "waking up" after having the AN that was compressing it removed, meaning it is a temporary issue that should resolve with further healing. Think I'll tough it out (and try to avoid triggers--big one now seems to be trying to do overly-complicated tasks with my mouth, like eat and talk simultaneously. I can live with being a boring dinner companion for a while, even if my husband feels differently...)

Thanks to every one for their support!

Carrie

PS--Lori, thanks for your suggestion. If it turns out my mother isn't able to continue administering her injections correctly, I'll certainly investigate local resources.

[leapyrtwins]

Carrie -

sorry to hear about your mother's issues, but so glad to hear you are recovering well.

I would love to see pictures of a repeat retrosigmoid - although I hope to never have to do a repeat myself (no offense).

How's your son doing at camp?

Jan

[jerseygirl]

Carrie,

I would love to see the pictures of your scar! My neck was also affected during the first surgery and it was very painful for a long time. The surgeon told me to move my head from side to side. Stretching the scar (yoga vs. weight lifting) also helps enormously. I also got trigeminal issues after my second surgery. It was not to the point of pain but they lessened considerably, so hopefully yours will, too. The first three months post-op are by far the worst symptom-wise.

Sorry to hear about your Mom. I cannnot even imagine the stress you have now. It does not do wonders for your recovery. Do you have any siblings that can help take care of her while you tend to yourself? It is little consolation but the price of a nurse giving a shot is the same here in NJ!

                  Eve

[wendysig]

Carrie,
Sorry to hear about the stress being caused by your mom's continuing health issues and also sorry to hear she is not doing great in general. 

On the other hand, you sound like you are doing wonderfully except for the stress, which cannot be easy.  When you get a chance to post the pics, I'll be really interested to see them.  Hope your recovery continues to go smoothly.

Wendy

[Debbi]

Carrie-

So sorry to hear about the issues with your mom.  Wading through the insurance claims all by itself can be a full time job.  We are still trying to sort things out from when my father in law fell and broke his hip (a week before my surgery!).  It takes so much time to fight the insurance company on each claim.  I know you know this , but don't push yourself too hard, Carrie.

Meanwhile, i can't wait to see the pictures of your incision!  (Wait, did I just say that???) 

Have you tried warm compresses on the side of your neck and face for the pain?  I have found that to be very helpful.  Moist heat is very good - 10 minutes on and then rest.  Also, if you can find the joint where your jaw connects (right in front of your ear) and massage it gently wiht your finger, that also helps the pain.  I posted somewhere else here on that, because several of us have had problems with facial/neck pain post surgery. 

Hang in there!~

Debbi - off to see Dr. Louie today

[Tamara]

I had good luck using the vibrating massager on my face and jaw.  Jaw pain is pretty much gone, about 4 weeks post-op...wow, time flies when I'm having fun!

Tammy

[Jim Scott]

Carrie:

Congratulations on your continuing recovery despite the draining demands being made on your time and energy.  I'm sorry to learn of your mom's medical issues and the complexity of insurance and other bureaucracies that you have to deal with while attempting to recover from a second AN surgery.  That you seem to be doing so rather adroitly is a testament to your character and strength, both physical and emotional.  You're doing the right thing to help your mother at this time and that is highly commendable, especially as your recovery is taking place simultaneously. 

As an official 'Senior Citizen' (who still thinks he's about 45.  O.K., maybe 50) I quietly harbor a dread of ever being a 'burden' to my only child, my adult son (almost 29 and single).  I think most parents do at some point.  He is in denial of any such thing ever happening, as he sees me as near-invincible, especially after my relatively successful bout with an Acoustic Neuroma.  I appreciate his confidence but wonder how he would react if I ever became less than self-sufficient or debilitated by illness.  He replies that nothing would ever dare try to debilitate me.  He said (in effect) "Dad, whenever you get sick, you  get mad about being sick and will yourself better".  A bit of an overstatement but amusing none the less.  Fortunately, my wife is a decade younger that me and will likely be around to deal with any old-age infirmities I may encounter.  However, she thinks I'll outlive her (my dad lived to age 92.)  We'll see.

Carrie, I'm so glad you're progressing with your recuperation.  Having the staples removed is always a bit of a landmark (was for me) and washing your hair (even for a man) is very rewarding when that simple act has been effectively denied you for some time. I hope the pain subsides and I admire you for not only dealing with it but avoiding using drugs to handle it.  In that regard, you remind me of my intrepid wife.  She's undergone numerous spinal and neck surgeries and always rejects pain meds afterward unless absolutely necessary, which is rare.  You gals are tough!

Thanks in advance for the promised photos of your incision, for reference.  Although they may not be not especially attractive, showing them is a selfless act and I appreciate you for thinking of it. May you continue to do well and may your mom have better days, too. 

Jim

[cmp]

thanks everyone, as always, for your kind words of support! And I'm glad to see the upcoming screening of my incision pics has a audience iin place!  (I am still waiting for my husband to take the "after"--ie post-suture--photo; he has been trying to get back on track at work after what seems like a long time away from it, and not even for a well-deserved vacation!)

Eve, Tammy, and Debbi--thanks so much for the suggestions on ways of dealing with facial/neck pain. I will be certainly be giving them a try.

(And no, Eve, I'm my mother's only child, so when I can't do something for her myself, I find myself in the very interesting position of trying to successfully help a very confused old lady navigate whatever other resources are available--ie today I scheduled a cab to take her to a last minute doctor appt--local, thankfully-- that was at the "wrong" time for the van at her facility to help her out with, and though I called last night and again this morning to remind her, I had my fingers crossed till the last minute she'd remember to be in lobby at 12:45! Now I have to follow up with her doctor, because the report she came back with--that she'll need biweekly blood tests and blood transfusions every 3 weeks for the rest of her life--may be as bad as it sounds, but she may have gotten a detail wrong, as well. Sigh...)

Jim--it sounds like your son has your personality pegged! He and your wife will probably turn out to be right--you'll break the Guinness record not just for longevity,, but for making to an absurdly old age without anything ever having gotten you down for longer than 2.5 weeks, on a single occasion in 2006...  (But I'll bet if you ever do need him, you'll find he'll be there in the blink of an eye, without feeling burdened in any way. It's amazing how well-prepared we only children are to return a few favors, after all those years of having our parents all to ourselves!)

Jan and Lori--thanks for asking about how my son's faring at camp. He has been doing very well, though he seems to be suffering from some homesickness now (as well as terrible constipation--that's what he gets for being such a rotten eater!) He snuck a call in on his cellphone (a BIG camp no-no) during their trip day out on Cape Cod--beach and an amusement park, not to mention "real" food--I think even though he broke the rules, it was probably healthy for him to...

tonight's exciting activity will be mall-walking with DH! (It's been so hot this week that I've been walking as early in the am as possible, then again just before dark, but tonight there are supposed to be thundershowers. So I guess I'll be trading the mosquitos and slice-through-it humidity for AC and Musak!)

Carrie