Today I ended up in two random discussions about cancer. In the first one a parent from Parker’s class shared about a cousin who has colon cancer. He was given mere months to live well over a year ago. I love hearing about people blowing those predictions out of the water. The second talk was with someone I barely know. His wife was diagnosed with cancer a few months ago, and they are treating it aggressively. Her chemo treatments are just starting so he is looking for any and all advice as to how to best support her. We shared information, and I said something about Dave’s side effects being cumulative over time. He said he hadn’t really considered that.
Later I was thinking that the effect of chemo is kind of like throwing a tennis ball against a wall. In the beginning you have all the energy of your (formerly perfectly healthy now you have cancer) self. So you throw that ball with all your might and eventually it bounces back to you – and YOU bounce back almost as good as before. As time and treatment go on though you have less energy to throw that ball and find that when that ball bounces back, it falls shorter and shorter of its goal. Sometimes you need help even picking up the darn ball and flinging it towards the wall. Sometimes you want to skip the ball and just beat your head against the wall. I feel like Dave has been at this point recently. So he is visiting his parents for a long weekend – golfing, getting some rest, and eating yummy food. He is also giving some thought to altering his work schedule to work with his current energy level and take some pressure off of himself. On Wednesday, we went to the Life with Cancer Center (http://lifewithcancer.org/index.php) and discovered the many many options they offer. Dave needs to take some time to reenergize so that he can continue this tedious arduous exercise.
This morning we had an appointment with Dave’s interventional radiologist. The purpose was to go over Dave’s recent liver MRI/post-Sirspheres check up. Dr. D. said that although the tumors showed no change in size, that didn’t matter. The important part of the scan to look at was whether anything lit up – live tumors will absorb the contrast and light up on the MRI. NONE of Dave’s tumors lit up! So the Sirspheres worked as well as it possibly could. Wooohoooo!
Dave asked about some pain he was having in his back. Dr. D. said that is likely due to the procedure, and it should subside over time. Dave also told him about some stomach pain he has been having. The plan there is to go off the OTC med he has been taking and see if the pain intensifies. If it does, he will be referred to a GI doctor to be scoped to make sure there isn’t something more going on.
I think that this has been a tough few weeks on Dave, and I am so hopeful that this positive boost will help reenergize him.
We went to CNU for Family Weekend. You won’t be surprised to hear that Sam’s room and bathroom at school resemble her spaces at home. Luckily her roommate is equally untidy so it works out well! We went out to lunch where I had to remind Sam that her cell phone has to be put down while eating. I think it was kind of a weird weekend for Sam. She is used to being on her own and doing her own thing. So, it was probably strange to have to follow family rules even for a little while. It was great to see her, and she certainly seems to have adjusted well. I don’t think that she is getting nearly enough sleep (again, that would require putting the cell phone away), but she is doing well in her classes so I can’t really say too much. We did a few of the organized activities, but I much preferred the time that we had on our own. Sam stayed at the hotel with us so we swam, watched tv together and got to catch up a little.
On our second visit back to the dorm, Sam’s roommate and her parents were there. Although I had met the mom several times before and the dad at drop off, this was the first time the four of us really had a chance to talk. The conversation naturally went to cancer and where the two dads are in the process. Ken told us about his new treatment and the details of what he has been going through. He mentioned that he had applied for social security and was sort of fast tracked since he has a terminal diagnosis. He told us how sleep deprivation is a huge issue for him. He ended by saying “It’s a heck of a way to live…actually it’s a heck of a way to die.” We all laughed even though it is not really funny. I think that it was good for Dave to have someone to talk to who totally understands. After a while though, he had had enough and was clearly ready to leave.
It seems that on my last update I spoke too soon. Literally later that night Dave noticed that he had a few bumps near his nose. It is not overly noticeable. He looks like he has a few white bumps and dry skin. However, the bigger issue is that it is uncomfortable. He is experimenting with a variety of lotions and was prescribed something by his oncologist. I think the bigger issue is that it is demoralizing, and I know that he is feeling a bit down right now. On the drive home he asked me to look into social security – that he wasn’t sure how long he was going to be able to work. I’m hoping it is a phase and that two upcoming trips will help. We are also meeting with a counselor from Life with Cancer tomorrow night. She has many years of experience working with colon cancer patients and their families, and I am hoping she can help us navigate this bump in the road. I’m also hoping that we will hear good news when we meet with Dave’s radiation oncologist on Wednesday. He could use some good news to lift his spirits.
Love comes in all forms and shapes. Today it revealed itself as tea. I have talked about this tea a couple of times before. Here https://embracingtherollercoaster.wordpress.com/2013/07/26/friends-2 and here https://embracingtherollercoaster.wordpress.com/2013/08/27/5-cancer-y-things. Since Dave was out of FlorEssence, Grant and I drove out to Leesburg on Saturday to a cute natural foods store called For Goodness Sakes. (The trip wasn’t entirely altruistic since we also had lunch at a delicious pizza place!) I was quite surprised to see that it was $35 for 17 oz. of tea. To put this into perspective, 17 oz. lasts about eight days. But they offered up another choice.
This packet was the same cost and you can brew the herbal tea yourself. Easy, right? Well, 12 hours later it is done. The tea involves boiling and stirring and boiling again and stirring again and sitting for most of the day followed by “scalding” which should not be confused with boiling. The final steps involve straining and storing in sterilized jars. I am quite proud of myself. This box makes the equivalent of six 17 oz. bottles at the same cost. So, well worth it I think. Sometimes this is what love looks like.
So far Dave has been feeling good after his Vectibix infusion on Friday. He felt a little tired and icky Friday night but has bounced back quickly and so far no signs of skin troubles. We are keeping our fingers crossed that this continues.
Finally, this has nothing to do with anything but is worth reading because it is hilarious. And we can all use some levity in our day. (If you are too tired to read it, click through and look at the pictures. I promise it is worth it.)
It is taking a little longer and is harder than I thought it would be to “step out into the sunshine again”. Tears are still quick to form, but I am getting there. In the forefront of my mind always is appreciation for all the support and love I continue to receive through meals delivered, emails, texts, phone calls – all with uplifting and reassuring messages. I am so grateful for my amazing friends and family who have patiently and willingly sat with me and listened to my troubles and bolstered my spirits. I am thankful to have a job that keeps me busy that I also love; I am constantly telling people that I could not have written a better job description for myself because I did not know that this job existed. And I am optimistic that Dave’s new treatment Friday will be exactly what he needs.
PS Lexy – I am also thankful that I cannot get those cookies locally. They are like crack (or at least what I imagine crack to be). I’m not even kidding.
Samantha came home last night. She had an appointment with her orthopedist this morning so he could see how her arm was healing. (It is healing beautifully, and she is now cast-less!) After the appointment, we grabbed some lunch and she mentioned that she might head back to school in the afternoon. Because Friday traffic south is such a nightmare, I told her that if she was going to leave today she should probably go as soon as possible. That, of course, I would love it if she wanted to stay another day, but I didn’t want her to sit in bumper to bumper traffic for hours. So for most of the day she waffled back and forth about whether to leave and all the while I was secretly hoping she would stay. I didn’t want to guilt her into staying – this needed to be her decision. When she was still here at 4:00, I thought maybe she had decided to spend another night at home. Parker and Grant came home from school and were excited that she was still there. They both had plans of things they wanted to do with their big sister. In the end though, the lure of college parties was too much to stand. Sam was afraid that she was going to miss out on some big fun so she left. It hit me like a ton of bricks. I think I reacted more strongly to her leaving today then I did when we dropped her off a month ago. I fought tears as she said goodbye and wiped away a flood of tears after she drove away. For several hours, I could not stop crying. Just when I got myself together, the tears would flow again.
I’ve been thinking about my over the top reaction. Certainly I miss her, but we have adjusted to not having her here daily. I miss having the extra teens in the house on the weekends, and I definitely miss our late night chats. Still none of this is in proportion to today’s tsunami of tears. I’ve decided that I’ve been sinking to this low point for a while now. Usually I take on the optimistic role no matter what is going on. Even with the latests news, I didn’t allow my mind to go to “there”. But all my emotions are still so close to the surface. Dave has been under incredible stress and anxiety this week. Those of you who know Dave also know that he can release his emotions in less than productive ways. So, I’ve been on the receiving end of some pretty tough criticism and commentary, and I’ve tried to let it bounce right off. But it is still there. Waiting for an outlet. I’ve decided that when I opened the door to sadness over Sam leaving today, the other emotions also found their escape hatch. I don’t think I have ever felt this low. I just want to crawl into bed, pull the covers over my head and wallow in self pity. Tonight I give myself permission to be sad, and tomorrow I will force myself to step out into the sunshine once again.
Dave had his scan today. This is the email response from his doctor —
We ignore the increase in size in the liver lesions as this is post treatment effect and inflammation.
The lung nodules are slightly bigger but not much-as expected.
The liver multiple lesions all appear to have increased in size. These are
all diffusely low in density. 2 of the target lesions have clearly
increased as noted above. Additional lesions also appear larger. The
subcapsular lesion previously measuring 5.0 x 2.5 cm now measures 5.2 x
3.4 cm. Adjacent to this a lesion previously measuring 21 x 19 mm now
measures 31 x 27 mm. The spleen pancreas kidneys and adrenal glands are
not remarkable. The gallbladder is not remarkable No mesenteric or
retroperitoneal mass or lymphadenopathy is seen.
lungs demonstrate increase in size of several of the previously noted
metastasis. Anteriorly in the right mid chest the previously noted 7 x 6
mm nodule now measures 12 x 10 mm. In the lingula the previously noted 11
x 9 mm nodule now measures 16 x 16 mm.. A third nodule seen posteriorly in
the right mid to lower chest previously measuring 11 x 9 mm now measures
15 x 12 mm..
No ileus or obstruction is noted. Review of the bone windows demonstrates
no evidence of sclerotic or lytic bony metastasis..
1. The 3 previously noted pulmonary nodules are each increased in size on
2. Multiple liver lesions are also increased in size on todays study.
Did you notice “2 of the target lesions have clearly increased as noted above” but there was nothing above? Dave talked to his doctor and he said that he believes the increase is due to the SirSpheres treatment but it could be that the tumors have indeed grown. I guess we will know more when he has his MRI or PET scan in the next few weeks.
Dave also had an EKG today. He has been noticing some irregular heartbeats. We are waiting to hear what that test showed, if anything.
We will let you know when we know.
If you are reading this, then you are from one of two groups. The first group, made up of friends and family, was invited to share our journey via this blog. The second group stumbled upon this website through fate and decided to stick around. Either way, I am glad that you find our story interesting or helpful. There is another group who is not included, my three kids. They are not aware of this blog and don’t have the address because I don’t believe this is the appropriate vehicle for them to gain information.
This blog started off as a cancer blog – a way for me to share information with a group of people in an efficient way. Somewhere along the line, it became more of a life blog. It is like living with cancer in that there is lots of real life with cancer interwoven throughout. Just as life can’t be 100% about cancer, neither can this blog.
Although cancer permeates our world and effects all of us, the cancer story is about Dave. It is not ultimately about me or the kids. So this blog has become my space, a safe place to reflect, share and sometimes just ramble. I don’t think that I should have to justify my thoughts or writing, but in this case, I will.
A little while back I wrote a blog post titled “Learning Curve”. It has come to my attention that a couple of concerns were raised about what I wrote. So, I would like to first of all say that in no way was it my intention to paint Dave in a negative light. I have reread my posting (and had others do the same), and I still don’t think that I did. Dave and I simply do not agree on this issue. As is true in all relationships, there are people or ideas on which we can’t see eye to eye. My purpose was to take all of the negative feelings of hurt, anger, and frustration and dump them out once and for all. So that is what I did. This person is no longer a part of my thoughts and life. It was something that I felt that I needed to do in order to move forward in a positive way for myself and my family.
If you would prefer to only read about health updates, I always categorize those stories as “Updates”. You can click on the link on the right side menu to only read those postings, if you prefer.
I hope this has cleared up any concerns. If not, please feel free to message me and share your opinions directly. I would appreciate the opportunity to hear your thoughts.
Monday – Brunch with friends. The perfect way to start any week, I think.
Tuesday – First day of school! Parker is excited to have fun new school supplies and the same teacher as last year. Grant goes back reluctantly – he is unimpressed with new binders and pencils, but he has done his reflection on the cancer book and completed the math review packet. Dave has worked all summer but it’s different, of course, when the students are there. I went back to work last week and am excited to see the building teeming with kids. I have the best teaching job on the planet. Once again I would like to say how much I love what I do. Also, part time? Perfect.
Wednesday – The day reality sets in and we realize that we have to do it all over again for 190 days or so.
Thursday – Scan day for Dave. This scan feels huge to me. Almost as huge as the very first one. Dave has been off of systemic chemo since early June so it will let us know what, if anything, has been going on. We know his liver tumors have been under attack from the Sirspheres, but this will let us know if the lung tumors have remained stable. The usual requests apply here for positive thoughts, good vibes, prayers. Dave will have a PET scan or MRI in the next few weeks to determine how effective the Sirspheres procedure was. Also, Sammi comes home!
Friday – Sam has an appointment with the orthopedist to check on her arm and hopefully have the cast removed. She will be very happy to be known as just “Sam” on campus instead of “Sam, the girl with the purple cast”. I am hoping she will stick around for the weekend, but I don’t want to put any pressure on her. If she wants to head back to campus, then that’s a good thing too.