Pain pain go away

So my newest issue is pain. I've been having a lot of pain in my left shoulder/mid-back. This has been going on for awhile and I've been working with my physical therapist and massage therapist to address the issue. Well, the pain has been getting increasingly worse. My chest started to hurt too and then the pain seemed to radiate from my the front to the back, with it coming from my left lung. The pain kept getting worse and worse, to the point where I had to take pain medication just to get comfortable enough to try to sleep.

Finally I decided that I needed to call, because the pain couldn't wait for my Thursday chemo appointment. I called my PT, thinking that it might be a muscular issue. After describing the pain, she suggested that I call my oncologist so I called his office and talked to a nurse. She consulted with him and asked me to come in. I cancelled a voice lesson (that's a whole other story) and went in for the appointment. Dr. K said that it could be caused by many things and the pain seemed to be coming from the general area of my lung tumors. So, he sent me to get a CT scan. He order the scan to look at my heart too and rule out a pulmonary embolism. The waiting was torture, but I eventually heard back from Dr. K--the CT really didn't show anything. The tumors looked similar, with one looking slightly better and another looking worse, but nothing significant to tell us anything. So, the prescription was to wait and see and continue to take pain meds as needed.

The next day I saw my therapist and explained what had happened. She said that anxiety could also be causing the pain or contributing to it. So she suggested some relaxation exercises and visualization exercises. I'll try these because I definitely have issue with stress and anxiety.

Then, today I went to my rolfing therapist. Her thought is that the pain could be from my very, very tight chest muscles. So, she spent an hour working on that area and ouch! The area is still hurting, but I do feel like I can breath a bit easier.

I think that there is still something wrong and I'm not sure how we are going to figure it out, but I'll keep trying things to try to get this pain under control. I am taking the pain medications because my body does not need that stress.

I see Dr. K tomorrow for chemo, so we will definitely discuss the pain and hopefully come up with a plan for managing it.

I am also going to talk to him about the results of the CT Scan. I am glad that there wasn't a lot of new growth, but it is also discouraging that there wasn't significant shrinkage. I've only done 1 cycle (3 total infusions) and our original plan was to rescan after 2 cycles. I'm going to ask if that plan will change at all based on this new scan.

Nothing deep here today, just a report about how I'm doing.

Accepting Unknowing

I cannot understand why I have cancer. I don't understand why my husband died. I don't understand why there are millions of people starving in this world. I don't know why evil people are allowed to prosper while good people suffer. I don't understand this and that is hard for me. I hate to hear "everything happens for a reason" because it is so hard to see what that reason could possibly be. These things simply do not make sense. And I have to accept that I am not going to know and try to find some sort of peace that with unknowing.

I think. A lot. I think about the same things over and over. I take not knowing as a challenge. I do research. I make charts and spreadsheets. I search for the answers. This is the way that I work. And in a lot of ways it has served me well. This way of thinking made me a good student and made me a good lawyer. But it doesn't make me a good widow or a good cancer patient. I have searched and search for the "answers" and they are not out there. So I know that I need to find a way to sit with this unknowing and not obsess about trying to figure out what I did wrong or how I could have done things differently to get a different result. I need to remind myself that I did not give my husband CF. I did not make him die. I could not save him. I did everything that I could to be a good wife and give him a good life while he was here. I did what I could and that has to be enough. I have to remind myself of this whenever I doubt myself.

I must remind myself that I cannot understand why this happened and that there is no way that I can. I have to remind myself that it is okay if I don't know. It happened. Maybe there is some sort of knowing that I will have after death, but for now I have to accept that I don't know. This is not going to be easy for me and it will likely require daily attention on my part. But I am going to try to embrace the unknowing and stop fighting against it. Maybe that will help give my mind a rest and let me have a little more peace surrounding the issue.

Dark Days

The last few weeks have been difficult. I feel like I am slipping into a depression and that always scares me. I am seeing a therapist and working on it, but it is still so very hard. It is hard because I have so much grief that I am still processing or haven't even begun to process. Losing a spouse is not easy and even under the best of circumstances, the grief process is long and difficult. My cancer diagnosis has thrown a wrench into all of that. There are days when I struggle to get out of bed. Fortunately, Beauty needs to go outside a few times a day so I have to get up and get outside for a least a little bit. If it wasn't for her, I think that I might really struggle to get out of bed.

I miss Gessner so much these days and it seems like I am encountering more triggers. I still can't believe that he is gone. There are still mornings when I wake up and reach to the other side of the bed, only to be reminded that he is not there. Those are horrible mornings. Last night I had a rare happy dream where I just saw his smiling face. It was just what I needed after some very rough days.

I think a lot about where he is and what happens after a person dies. I grew up believing in heaven and being told that everyone will have a mansion in the sky. Now, it is so much more difficult to picture that. There are days that I definitely feel Gess's presence. Whether this is real, or just my imagination giving me what I need I don't know. But it is comforting. I wish that I felt him more. I wish that he could be here to hold me. That is something that I miss the most--having someone to just wrap his arms around me and pet my hair. In those times, it felt like no matter what, everything would be alright as long as we were together. Somehow having someone who loves you unconditionally and with so much passion, makes everything else seem more doable. Now, on those lonely nights, I am alone and there is no one to hold me and tell me that it will be alright. There is no one that loves me the way that Gess did and that leaves a huge hole in my heart.

And these are dangerous times. When I have a bad night and feel alone, I spiral to a place where I believe that I am unloveable and no matter what my "logical" brain tells me, I cannot accept it on an emotional level. On an emotional level I feel like I am hurting people more than I am helping them I worry that I am just hurting people by being here and my instinct is to run away. I know that is not the answer and that it would in fact hurt my loved ones more, but there are times when the pain is so severe that running seeming like the only option.

This process is exhausting and I am worn out. I take it one breath at a time and am some how holding it together--if only by a very thin string. I think that I might need some duct take soon :)

Four

It's been a long time since I have updated my blog, mostly because I don't have any good news to report, only more bad. Usually I write to help process through the emotions, but have avoided writing for weeks, even though I actually have a lot to say. I think that it is a protective measure--the mind and body can only handle so much at one time. The mind regulates the amount of pain that it can take at one time to protect itself. So I think that my lack of writing has been, at least in part, self-preservation.

Since I was first diagnosed in April 2011, there was a suspicious spot on one of my ribs. I had been skiing--and falling a lot--just a few weeks before diagnosis and the spot was consistent with a bruise. The location of the spot made it difficult to biospy and the treatment plan would not change regardless of the results, so we went ahead with treatment and hoped that it was a bruise. After lots of chemo an my bilateral mastetcomy the spot on the rib was still there, ruling out the bruise theory. Still it was a bit of a mystery because the spot hadn't changed much during the chemo. The spot looked slightly brighter on the images, but not so much that it was conclusive. So, we decided to irradiate the area while doing the radiation to my chest wall and lymph nodes. Thanks to a fancy new radiation machine and a great radiation oncologist, they were able to do this without damaging my heart and with very little impact on my left lung.

I did a total of 38 radiation treatments, along with more chemo. I finished that round a treatment at the end of Novembr and took a much needed break from treatment. The radiation really wore me out and did a number on my skin. I try not to take pain medication, but by the end of radation I need narcotics to ease the pain.

Thankfully my skin healed relatively quickly after the stop of radiation and chemo--it's amazing what happens when they stop pumping you full of poison and burning you with radiation! Unfortunately, you have to wait for awhile to let the body recovery from the radiation to rescan and see if it worked. My oncologist decided that about 6 weeks was a good time to rescan. So I took off and visited my dad in Florida and Gess's sister, niece, mom, and grandma in Colorado. The trips were great and it was a good way to keep my mind off the cancer. The Florida sun was also incredible for my mood. I loved spending time at the beach and just relaxing.

When I got back from vacation I saw my oncologist who said that my blood counts looked good and thought that I could take another month or so off to let my body get even stronger and recover more fully from the barage of treatment I had been through. My oncologist explained to me that my body had not had a chance to recover from even the first round of chemotherapy because of the continual course of treatment. Needless to say, I was pretty excited. A month of life without treatment sounds like heaven! The only caveat was that I need to have an MRI to check the status of the spot on the rib.

I had my MRI on January 20th, a Friday morning. I felt guardly optimistic and was nearly giddy about my continued "cancer vacation." I also had my first post-chemo haircut...meaning I had enough hair to actually have a cut. I saw a great stylist who cleaned up my curls and also gave me a little sassy red. I walked out of the stylist's chair feeling good. As I walked into the changing room to get ready to leave, I checked my phone to see a message from my oncologist on my phone. I checked it and my heart sank. My oncologist apologized for leaving the news on my voicemail, but knew that I was anxious to get the MRI results and he had to step out of the office. The news was bad--the MRI showed a spot on my lung. It could be an infection, he cautioned. But it could also be the cancer spreading. The spot on the rib also looked somewhat improved, again, not good news but still inconclusive because of the radiation side-effects. I immediately called my oncologist back and talked to him briefly. He said that I needed a needle biopsy of the spot on my lung and we scheduled that for the following week.

The next week the full MRI report was in and I saw a copy when I had a follow-up with my radiation oncologist. He also showed me the MRI films and I saw the tumors. There was not just one as was noted with the radiologist's preliminary telephone report, but at least five--four in the left lung, one in the right lung. I asked my radiation oncologist if an infection coiuld present with this many spots and with them in both lungs. He said that it was possible, but not extremely likley. I could tell from his face that he thought that it was cancer. My friend Sandy thought it was cancer too. She arranged to be at my next oncology appointment.

I had the lung biopsy--not a fun procedure--and then played the waiting game yet again. I knew thta my oncologist would call immediately if the pathology came back negative, so by the time I walked into his office, I knew that the result was positive and he immediately confirmed my intuition. The cancer had spread to my lungs. It is stage IV. The oncologist also said that rib lesion was cancer--so I was stage IV from the beginning.

The statistics for stage IV breast cancer are not good. The median survival is about 2 years. And I've already spent 10 of those months, meaning I could have about 14 months left. The range for survival is wide, however, with people living longer or shorter. My oncologist said that there is a chance that I could live for awhile with the disease if we find the right chemo. But the reality is that the prognosis is not good. My cancer has proven to be very aggressive and has continued to grow despite aggressive chemo treatment. There are still some more drugs that we can try, but there is a good chance that they won't work. I'm not giving up hope, but I am also realistic about my options. I do not want to live the rest of my life being sick from the chemo. I want to enjoy the time that I have left with my loved ones, but I'm also a fighter.

For now that means that I am going through chemo. It does make me sick, but it is bearable for now. I had 3 weeks of treatment and now have one week off. Next week I start another cycle. After that I will have another scan to see if the chemo has worked.