Where to find grace through this

[Ann Cronin]

Good morning,

Questions, questions, questions..... Wow, thanking God for this group!! I was thinking about what it would be like to not have such a place ..... makes me shudder.

I'm really struggling with finding the grace to get through this. I'm the type of person who, when sick, would rather be left alone. I'm a private person so I've only shared my DX with family, my best friend and anyone on a need to know basis (work). Took me a month to share with my siblings and I've asked them not to share with extended family. In fact, I'm so private that Ann is not even my name (well, it's my middle name). 

Already people I work with have shared my secret. I can tell because people who used to greet me with an excited "Hey! How's it going?!?" now walk past with that sorrowful look of pity. THAT is painful.. Though I'm private and tend to favor being alone in my illness etc., I'm struggling to produce an occasional smile as I go through the daily routine. It takes all the energy I have to pretend that I'm not feeling doom & gloom 24/7.  I know everyone is different but is there an average time frame for getting over the hump of shock, fear, devastation, helpless, hopeless, deep sadness? Jan. 14th was the day I was first told of the "probable metastatic lung cancer". 

I saw a thoracic surgeon Thursday. March 8th I'm scheduled for a second biopsy, this time for lymph nodes in my upper mediastinum. They will do a rapid test while I'm "under". If the test is positive, I go home that day and get a chemo/radiation plan. If the test is negative, they will proceed with upper right lobectomy. So I go into the hospital and go under anesthesia not knowing what my condition will be upon coming to... "will I be going home today or in 5-7 days?".... just crazy... This surgery is so scary to me but it would mean stage 2 so...... I'm going to cry no matter what when I come out of anesthesia. I'll cry if I awake in no pain with no tubes coming out of me because that means my stage is 3 at best. I'll cry if I wake up with tubes coming out of me because, well, this surgery is a big deal and recovery is expected to be pretty painful (not just physically). 

Just as in previous posts of mine, I still feel like this whole process is chaos. I was told in ER I have metastatic lung cancer. Have biopsy of lymph nodes nearest nodule via bronchoscopy. Pulmonologist tells me the lymph node nearest nodule is positive for nsclc adenocarcinoma but other nodes negative. PET scan doesn't show anything else lighting up so I'm told probably stage 2 and possibly curable with surgery & chemo. He sends me to thoracic surgeon to discuss surgery. A week later I'm at thoracic surgeon prepared to talk surgery and get going on fighting this disease and I'm told "Yeah, we want to check lymph nodes in upper mediastinum first but we have no availability until April". What?!? Unacceptable!! Now I'm confused by the additional biopsy and pissed about having to wait another 2 months??? No way.... (I live in N.H). They suggest that I could go to Mass General in Boston, perhaps they could do it sooner. "Ummm.... yes please!" What the..... so that was my appt. on Thursday.

I've still not had an appointment with Oncologist ..... that does not seem right to me. I don't care if I don't have a confirmed stage etc. - doesn't seem right. I have questions!!! I have questions that apparently can't be answered by pulmonologist, thoracic surgeon.... 

This rollercoaster is insane...... I feel the urgency of getting going on fighting this evil disease and feel that the medical professionals are completely kicked back, I feel like I'm dealing with sloths. How are they so.... not urgent!?! What am I not understanding??? I will note here that the surgeon in Boston was a bit surprised at where I am at in the diagnosis process, he felt I should have all biopsies completed and have a confirmed diagnosis by now. Now waiting until March 8th.... I feel like a ticking time bomb.

Phew.... thanks for letting me vent here.....

My number one question.... tips on taking this walk with grace. I'm trying to be strong for my adult children. My daughter is pregnant and I feel like this whole thing has stolen all her joy. My grandchildren, especially my sweet almost 5 year old Maddie..... she is showing signs of stress, she's become weepy over absolutely nothing. We are careful not to talk about any of this in front of her but she is obviously feeling the difference in my personality and in her Mom's. We are all very sensitive by nature. I need for this damn disease not to wreck my loved ones.....

My number two question, not nearly as important as the first..... anyone have any "you absolutely must..." tips for my 'maybe' surgery? 

Chaos... can't get past the chaos.. so tired of crying...Thank God I have God with me!!

Thanks in advance for any advice. 

I love you ALL!!!

Gloria  .... yup, but I'm still going to go by Ann because it allows Gloria to step out of the cancer DX if only in this forum...

 

[Tom Galli]

Ann, 

How does one do the lung cancer diagnostic and surgical walk with grace?  Let me know when you've found an answer.

What are tips for maybe surgery? Audition a pillow that allows you to sleep elevated.  You'll need it to transfer some of your body weight to your hips and off of your incision areas.  Go to a bedding store and test drive the angular pillows.  Then purchase online for better pricing.  Best tip for sleeping long term.  Invest in a high density foam mattress along with an electric adjustable bed.  But sleeping for me is still a problem -- chronic pain.  My surgery and treatment was very extensive. Hopefully, yours will be less so.

If having surgery in Boston, check out the several free hotels associated with many hospitals for patients with cancer.

I completely understand your desire not to let this disease affect your loved ones.  But, even with a successful surgery, you'll still be yanked into cancer mode with follow-up diagnostics for years so you should resolve to settle the reality of lung cancer with your family. Moreover, recurrence of lung cancer, even for stage 2 disease, even with surgery, is greater than 50%.  I think it is greater than 60%.  I once wrote a blog about it in the blog section of this forum citing a medical journal's recurrence projection.  I didn't realize the high probability of recurrence and didn't prepare for it.  I truly hope you are one and done.  All this speaks to my suggestion for a frank discussion about lung cancer with your family.  What happens when one doesn't have a frank discussion?  Read my book.

All the surgical - diagnostic unknown unknowns you relate are very familiar.  I went down the same path of not knowing about my surgical outcome and woke up with a lung removed.  I had two subsequent surgeries to address a fistula in my airway, 4 rigid bronchoscopy procedures to insert stents again for the troublesome fistula, and along the way suffered a recurrence (actually three recurrences) of tumors in my remaining lung.  My treatment in a word was mayhem, but I'm still here.  I say this because I think I represent a worst case living outcome and if I can live and enjoy life after lung cancer, so can you.

Stay the course.

Tom

PS - chaos happens only when you let it happen.  You can't control cancer but you can control how you think about it. Regardless of treatment outcomes, you have life to live. Find joy everyday in the life you have.

[Donna G]

Thanks for the update.  I hope that test is negative so you can have your surgery March 8th but if not---------

I started with chemo and radiation and later was able to have surgery ( and then more chemo) and it worked at least for the past 20 years.

This diagnosis is hard on the whole family.  Little ones can really see what is going on.  Perhaps you can teach her if she is upset that a thing to do then is pray.

As for the surgery.  Keep active  now,  before surgery, as go walking even if as it is winter, it is in a mall or store.  Know that you will have to get up and get active after

surgery or it will slow you down even more or set you up to develop complications. 

I pray all goes well for you.

 

Donna G

[BridgetO]

Hi Ann,

This is a good place to rant and vent. We've all been there and we understand. 

I agree completely with Tom about not being able to control cancer but being able to control how we think about it,, and about the need to live life regardless. These things aren't easy to do.

I also recommend the pillow. I got a 12 inch high foam wedge and it was a lifesaver. 12 inches will give you a 45 degree elevation, which was recommended to me.  Ir you have surgery will it be VATS? or open surgery. I had a lower right lobectomy and 27 mediastinal lymph nodes removed by VATS and it was much easier than I expected. I was discharged the following day with a chest drain tube in place. I had opiate pain meds for the 10 days I had the tube, but little pain after it was out.

You ask how to get through this with grace. I haven't figured tha out, but i do have some suggestions to relieve the chaos. First, know that chaos, fear, etc., are normal. You're human, after all. all. So don't be hard on yourself; it only makes things worse. But do find some things that will help relieve your stress and anxiety, even if only partially and for short periods. Use whatever spirtiual practices you are comfortable with: meditation, prayer, lighting candles, or whatever. Ask for peace; try to avoid getting into the "why me?" stuff.  Get what exercise you can, both before and after surgery. I was walking around the hospital floor the day of surgery and within a couple of days was taking short walks around the neighborhood, hiding my chest tube and drain bag under an oversized raincoat. Exercise will speed your recovery as well as help your mood. 

Let other people help you. If people ask what they can do, tell them something specific, like bring soup, or a magazine, or drop by just to chat, or whatever. A lot of people really want to be helpful and don't know how to be. One of my dear memories from a prior (non-lung) surgery was of a friend who installed a much needed grab bar in my shower--she asked what she could do and I asked her to do this , knowing that she was very handy with such things.  Speaking of showers,  if your'e going to have surgery, I suggest gettinghhw a shower bench and a hand held shower head if you don''t already have one. 

Best of luck to you, Ann.

By the way, my name isn't really Bridget. It's my nom de plume! Or maybe alias.

Bridget O

[Susan Cornett]

Hi, Ann. I didn't look sick during my first round of treatment, but when I lost my hair during my second treatment, I got the look.  At first, it bothered me because I thought it was a look of pity but then it dawned on me that those people may have walked the same path or a loved one walked the same path and they understand.  At that point, I quit caring about that.

I just hit my 2 year mark since diagnosis.  There were certainly ups and downs, surgeries, and treatments; but I also came through this with a new perspective on life.  Working long hours? No longer important.  Bad traffic on the commute? Don't care.  I find myself calmer and at peace with everything.  I've shared my diagnosis far and wide - family, extended family, co-workers.   I do it simply because I want everyone to know that lung cancer doesn't play by the rules and doesn't care about smoking history.  

It all stinks.  My fear is my parents and my husband will have to bury me.  That is what keeps me moving forward and doing everything I can to fight this damn cancer.  Vent any time - we are always here for you.  Keep us posted.

[Ann Cronin]

You all are so kind, thank you for that!

Bridget - it will be open lobectomy, unfortunately. The surgeon stated that in his opinion, in my case, it is the most full proof way to get all of it, not leaving anything behind. I've definitely not had the "why me" thing going on. I learned a long time ago that bad things happen to good people all the time. I do rely on my faith, don't even think I could live an uncompromised life without it! 

I went to Barnes & Noble today for some books on coping with this disease. They really didn't have much but I went with a list and placed an order..... gotta just keep swimming! In the last two days I've made a point of being my "normal" self with my granddaughter. What used to come so natural has been a struggle and I hadn't realized how my blues would effect her. She actually looked at me like "there you are, Nana, where have you been?!?" I already see a change in her little almost 5 yr old self... she was getting the blues too, poor peanut!! 

Love you guys!!!

[BridgetO]

Hi Ann,

I bet there are those who've had open lobectomy who will respond and tell you what it was like. I suggest you start a forum topic called something like: OPEN LOBECTOMY: WHAT"S IT LIKE?

Bridget O

 

 

[Donna G]

Being that it was 20 years ago, I had the open Lobectomy.  In order to enter the chest cavity they break

several ribs to spread them apart.  Of course they have to get your muscles out of the way also. 

My doctors did a great job removing my tumor was up in the apex ( near my shoulder) and also all the

right upper lobe.  I had a chest tube after surgery for a while. It took time to get over the surgery. 

After about 8 weeks they sent me to the YMCA for water exercises to get my back in shape. 

My rib bones never did heal back together so even today I don't want to wear anything that "sqeezes" my chest.

All was well worth it however-----------I am still alive and breathing. 

Donna G

[LexieCat]

If you're having to see another surgeon anyway, I'd ask again about the possibility of VATS.  I know there are some tumors that can't be accessed with VATS surgery, but if what they are doing is removing the lobe, I've never heard (which doesn't mean it isn't true) of open surgery "getting it all" any better than VATS.  Either way, they are removing the lobe, and if the tumor is inside, I'm under the impression that VATS does the job just as well as "open" surgery.  

Getting another opinion on something like that never hurts.  Some doctors are better trained at performing VATS or robotic surgery (similar to VATS).

I'm a pretty private person, myself, and I can't STAND people feeling sorry for me.  My own approach was to be completely open with people I worked with--to the point of sharing a webpage the hospital provided for sharing news.  It was still within my control, and I could post whatever news I wanted to share without having to have a zillion conversations about "how you are."  The way I looked at it, if it turned out to be good news (in my case, I considered early-stage good news), then people could get back to normal ASAP.  And if it turned out to be bad news, at least I was controlling the information--if you are undergoing significant treatment, people will know that anyway, and I'd rather control the info myself.  If your hospital doesn't have something like that, you could use Facebook or some other forum if you want to share info.  Another thought is to designate one "point person" to handle news.  I found it much easier to focus on getting through the surgery and recovery without having to explain stuff over and over to people.

As far as family is concerned, I have a small family and those closest to me had all the info they needed.  I didn't inform my 89 y/o dad and stepmom because he would have worried, quite literally, for the rest of his life.  And his memory is such that I would be having to explain EVERY week that I'm fine.  

And yes to the wedge pillow for sleeping.  It will help.  

Seriously, I'd get a second opinion on the availability of VATS.  You certainly want the most effective treatment, but at the same time you don't want more pain and recovery time than you have to have.

[Steff]

Ann,

My mom had an open lobectomy. She was in the hospital for about 10 days recovering. She probably would have been able to leave sooner, but her surgeon took her drain tube out too soon and she had to have another one put in. Pain was mostly tolerable with ibuprofen.  Afterward, the incision bothered her because it was around where the band of her bra was. Now it's fine, but she really struggled with that for awhile. Those were really the only 2 major hurdles she had. 

[Ann Cronin]

LexieCat - this is the second surgeon. The first had no availability until April to do the biopsy and surgery would have been who knows when... The surgeon expects to have to remove quite a few lymph nodes and he mentioned using the open method is less likely to miss anything... I feel like a ticking time bomb so I want to keep things moving. The surgeon has an amazing reputation as does Mass General as a whole. 

Steff - Just pain I get just thinking about this surgery requires more than Ibuprofen  

[LexieCat]

OK, I thought the opinion about open surgery was from your first surgeon.  

Here's a fairly recent article that seems to indicate VATS or robotic surgery (similar procedures/recovery) appear to be as good or better than open surgery for lymph node dissection:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5088393/.  Obviously only you and your doctor can make the decision, but I felt very confident about my VATS. They removed 16 nodes, all of which were negative.  My surgeon told me that if something unexpected was encountered during the VATS procedure (e.g., uncontrolled bleeding), they could switch during surgery to an open incision to address the problem.  

If you're totally comfortable with the open procedure, then go with that.  Personally, I think I'd want another opinion on VATS.  But that's me.  

[Tom Galli]

Ann,

I had an open pneumonectomy (three total actually; one removal and two repairs).  I did finally neck down to ibuprofen but in the recovery room and ICU, I was hooked up to a "morphine push" (a IV morphine device with timer hooked up to my IV).  It allowed me to self-inject morphine (measured dose) every 15 minutes and I needed it, not every 15 minutes for I would often sleep several hours after using it.  I was concerned about becoming addicted to morphine but my surgeon told me as long as my pain receptors were very active, the morphine would not become addictive.  I can't exactly remember how long I was on the morphine push. My wife says about 2 days after the first surgery and perhaps 4 days for the second and third.

When the morphine was removed, I was allowed morphine injections and the ward nurses could tell when I needed them.  I could tell also, but they deal with thoracic surgery everyday.  I recall my hospital nurses and surgeon being very attentive and attuned to my level of pain.

That said, I was up on the second day after my first surgery and walking the ward with a physical therapist.  The therapist told me to hit the morphine injector before attempting to get out of the bed.

Bottom line: I wouldn't worry about post-surgical pain.  Mass General has a world class reputation.  You'll be fine.

Stay the course.

Tom

[Lisa66]

Hi Ann, 

  I do not have cancer, but my father has squamous cell carcinoma of the lungs. He is on his second week of treatment. I wish to talk to you as a daughter.  I had my dad at the emergency room with chest pains, and when they came in with chest exray results showing a tumor, it was like someone kicked me in the stomach. His diagnosis affects the whole family, and I don’t think there is any way around that, but please don’t try and be strong for your family. Let them be strong for you. That is what gives me purpose and a way to deal . By all means find ways to stay strong and fight, but let those around you help fight the battle. It is good for you and them. I have a battle book that I keep recipes, treatment options, remedies for side effects, among other things that I research. I hear you say you are a private person, but please let those around you boost your spirits when you feel so down.  I wish you all the best no matter which route is taken.

My fathers cancer has taken the joy right out of me because I love him so, and do not wish to have to travel this road with him, but I will not let him travel it without me, and I am sure your daughter feels the same.

Best of luck

Lisa

[Ann Cronin]

Hi, Lisa,

You sound like an amazing daughter and thank you for your kind words. I'm not sure if you are a Mom but I can tell you, a mother is only as happy as her saddest child. I am allowing my children to help because I know they feel the need to do something... anything for me.... Though I don't have my parents with me anymore, I know exactly how they feel. My motherly instinct is to protect them in any way that I can. 

I will lean on them and let them help but I prefer to keep my gut wrenching emotional pain from them when I can. I will use this forum, an occasional friend and perhaps other support groups when I find one. My daughter has been with me for all the appointments and helps with many things, just trying to keep her sadness at a manageable level.

Your father is blessed to have you, Lisa, please remember to take care of yourself. As a cancer patient, we need to keep as physically and mentally healthy as we possibly can. Seeing our children's sorrow pulls us down emotionally.

Thanks for sharing and best of luck to your dad, you & whole family!

Ann

 

[Lisa66]

Hi Ann,

   I am a mother of three grown boys that are still my babies, so I do understand the need to protect. When you wish to vent I would be honored to listen, and these guys  in this forum are so knowledgeable and helpful. They will listen when it is to hard to share with your family. 

I will keep you and all here in my thoughts and prayers.

Lisa