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Post Lobectomy Update ~ Some problems; Thoughts about this experience


ColleenRae

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Hello!

My apologies for not being an active participant on this site lately... I really DO like reading / hearing from everyone who posts here. It helps to educate me, give me courage and makes me feel like I am a part of a group where people really do understand my feelings.  As I continue to heal and get better, I hope to join in more and offer support where I can.  We are all connected in this!

I did report a while ago that I had my lobectomy on October 1st. RUL. Grateful that the pathology report showed T1a with no lymph nodes or metastasis. So, I was told I do not require anything further than the surgery - which was totally fine with me!  Nevertheless, it is still a shock to learn that the tumor was cancerous. I had no symptoms. I felt fine. I was active. I had quit smoking. But, it was cancer. The surgery went okay, although I was really heavily - I believe, overly - medicated during the time I was in the hospital.  I had surgery on a Monday and was discharged that Thursday.

A week after being discharged I started having pain when breathing in and noticed my o2 levels were dropping (I was using a monitor when I went walking).  I had to scurry down to Seattle where they did an ultrasound and said I had fluid building up, so it had to be drained.  I felt a bit better.  I decided after that appointment to get rid of / stop taking some of the med's that had been prescribed. I stopped taking Oxycontin and Flexerall. I continued taking Gabapentin and Tylenol/Ibuprofen and lidocaine patches.  My incisions never really bothered me much - they weren't very painful.  But, I had and continue to have some really bad bouts of peripheral nerve pain - mostly under my right breast and in the abdominal area.  I also had a TON of bruising (which no one has offered an explanation to me for), especially along my tailbone.  Over 4 weeks later and that bruising is finally starting to clear up. I also found I had a lot of night sweating / chills the first couple of weeks - but I think it probably had something to do with one of the med's I was on as it has stopped (I'm obviously a light weight - can't handle my drugs!)

Five days after I had the fluid drained from my lung I ended up having to go to the ER due to an allergic reaction to the Gabapentin. It took almost another 5 days for the swelling in my eyes to go away. My scalp had started to itch like crazy the night before, then my bottom lip swelled up. Then I found the skin was peeling off my fingers and my eye lids were swelling. No, I really wasn't having much fun with all of this... Ha!  BUT... I still made sure I got out and walked every day. My son was wonderful about getting out with me and we were blessed with a beautiful, warm and dry October.  I was walking 2x per day for 45 -60 minutes each time.  I was still having a lot of pain it seemed - nerve pain.  I had stopped taking all med's except for Tylenol and lidocaine patches. I called the surgeon's office and the NP I spoke with wanted me to start taking Oxycodone again starting with 2.5 g at night.  I did one night (and slept 10 hours!) but I was really agitated the next day.  I have not taken it since.  I'm a little frustrated as the pain can still be quite bad (enough to where I wake up and find myself crying during the night... unless that's depression).  I do find the pain feels better when I walk briskly, but when I'm sitting or standing in one spot (like cooking) it is painful.  I'm not sure how to handle this in the future and have not been very happy with the surgeon's staff's responses. Just hoping the pain will lessen in time.  It may not if it is nerve pain - I realize that.  It just seems to be really sore where the chest tube  was for some reason. There are some days where I wonder why I had this surgery when I had no symptoms... but have to remind myself that this nerve pain is a much much better trade off than having cancer.

I thought things were going okay but late last week I started having some sharp pains when I tried to breathe in. I kind of panicked and thought it must be fluid again. I did not have the energy to try and get down to Seattle so I scheduled an appointment at our local pulmonology clinic. I was not able to see my regular pulmonologist, but the one I saw had me go get a chest xray this past Tuesday.  She wrote the following to me today:  "The chest xray showed changes consistent with surgery--elevation of the right diaphragm, blunting where the diaphragm meets the ribs on the right (costophrenic sulcus)--no significant pleural effusion. They did notice a 5 cm x 3.3 cm moderately defined area of nodularity particularly over the right midlung that we don't see well on the lateral view. We wouldn't typically expect this. "  They compared this recent chest xray to the last one I had in Seattle on 10/11 and this "nodularity" did not show on it, so now they want me to get another xray next week.  I tried not to feel worried, but I was. I called my surgeon's office (impossible to reach him, I'm finding... but I did send an email tonight to him) and spoke with his office nurse.  She didn't think I should get too alarmed, saying these nodules might be normal, due to inflammation, etc.  Nevertheless, I am worried and really want to know what they could be.  I'm feeling okay. I just get tired more than I'm used to. I'm more active. Driving myself to the grocery store a bit (but pretty sore still to do so comfortably or confidently). Again, for me, walking has been the best healer for me - both mentally and physically. Now it's dumping buckets of rain, so I'm going to have to find a new spot to get my walking fix!

Has anyone else every had anything like this "area of nodularity" the xray is showing?  What could it be?  I am scared. I think I always will be from here on out (but I will learn how to live with that fear!)

BTW... I have also mentioned that my son is my "caregiver" and he also happens to be on the Autism Spectrum. That was a big concern for me. He has been a great companion, although it was not easy at first.  He did not stay at the hospital much after the surgery... which was fine, I was so dopey, but I realize in hindsight I really needed to have an advocate for me there (especially when they tried to discharge me so early). It was exciting to see him able to stay at the hotel on his own and even eat out at a restaurant by himself (a first!) while we were in Seattle. There were big and small blessings in this journey!  The first night we got home, however, it was really tough. I can't even remember what I said to set him off, but he got really stressed and upset and ended up hitting me, fairly hard, across the back, just missing one incision. I got really upset - I was afraid as this is NOT something I've ever experienced with him. I did give him an earful, but I did not feel safe with him as my caregiver at that moment. Fortunately, we were able to calm the situation down and talk a lot... I understand that this was a very stressful situation for him as well, and he was feeling a lot more responsibility than he has been used to... but that was a rough start for both of us.  But, I can say that the past few weeks have really been a delight in many ways... I don't know what I would have done without him ("friends" who offered to care for me at their home after the surgery did not follow through - reasons unknown :-( ).  We've had such a great time on our walks each day and just talking... best experience ever and we feel even closer than before.  I can't say he's been able to handle "everything", but he's done extremely well! He has made nutritious meals for us. He's kept the house neat. He's played "phone secretary" for me which I've loved! He never did try to shop at the store alone but he's a big fan now of grocery delivery (although I've had to point out the increased cost of this to him...something he should not count on forever!).  Cancer may suck - although I am grateful for me hopeful prognosis right now - but this experience has really taught me what matters most to me. It has forced me to slow down, which has not been a bad thing at all.  I am going to need to learn how to not let the worry of cancer coming back or being found elsewhere dominate my life... That is the major goal I think I need to learn right now. I just want to learn how to live. I've been existing in a state of fear the past two years as the medical professionals continued to monitor my CT's... I don't want to waste the beautiful days ahead living like that anymore if I can help it.

Thanks for letting me share my thoughts, questions, fears, and discoveries here with all of you.

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Hi CollenRae........I'm new to this forum and can't offer any practical advice.  However, I can offer support, understanding and prayers.  I understand your fear about the unmentioned nodule because I have one too.  I will pray for positive news from your x-ray next week.  Keep us posted.  (HUG)

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Hi, Colleen,

Sorry to hear you're continuing to have pain--that really should resolve, for the most part anyway, over time.  I wouldn't worry too much about the "nodularity" seen on the x-rays.  It's most likely an artifact of the surgery, and may be related to the source of your pain.  I hope your surgeon will take a look at it--it may be that they will need another CT to get a better view.  Have you been referred to an oncologist?  Or is your surgeon going to deal with your ongoing scans?  Have they given you a schedule for subsequent scans?  I go for a scan every six months for now.  

I'm glad to hear your son has been such a help, but the hitting is concerning.  Does he work with a therapist?  I know he is under stress and it doesn't sound like he is abusive but hitting is NEVER OK.  I trust you made that clear to him.  If it seems like he is getting overwhelmed, it might be a good idea to consider having a home health care aide come in once or twice a week just to help out.

Glad you posted an update and hope they get to the bottom of your post-surgical issues soon.  Keep us posted on how things are going.

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Colleen,

After reading your post several times, I conclude you should find either a pulmonologist (best choice) or an oncologist (second best choice) close to home to consult with.  Surgeons are busy and they do surgery. You've got post surgical issues (drop in O2, night sweats [indicator of pulmonary insufficiency], and now the x-ray reported nodule).  So, I'd find a pulmonologist.

To ease your mind about the x-ray reported nodules, I am comforted by the words "moderately defined area of nodularity".  I'm not sure x-rays are precise enough to characterize lung nodules. Again, a pulmonologist is the best discipline to engage for lung nodules.   

I've had a chest tube after each of my three thoracic surgical procedures and after removal, the area was painful for about a week.  So, that was not unusual in my experience.  Keep on walking.  Walk a mall or a big box store if the Seattle winter rainy season has started.

Stay the course.

Tom

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