Tuesday, June 25, 2013

Great news from oncologist today! My body is responding very well to chemo. Tumors have reduced significantly in size and brightness. The cancer is dying faster than anticipated. Reduced the total number of treatments ordered making me now half way done with chemo. Still feels radiation is needed. Also, (drumroll) thyroid function is currently normal!!! Second appointmnet of day was with the surgeon who liked how the new port looks, hugged me and sent me on my way. This is the first week since diagnosis that I had appointments on Monday that did not result in various other appointments throughout the week. Thankful for all who are praying - this is going so well. Thank you, thank you, thank you.

Friday, June 7, 2013

Well, bummer.

It's been a crazy week. In addition to complications in my condition the kids were in a car accident. Two of the kids were out together, both are fine after a little spin on slippery 68 near the river crossing. The car is waiting at a shop to be evaluated, not sure what will be involved in it's repair yet.  What can we do but laugh at the added stress in our lives as long as the laughter stops and we all maintain our sanity. If we all just keep laughing madly I'm pretty sure the oncologist would prescribe us all something, she's pretty free with the drugs.

I have continued to struggle with infection at the port location. Today I woke to find a not so pretty picture that led me to call the surgeon who told me to come in right away. That visit resulted in scheduling surgery next week for a new port. As aggravating as it is, I'm just glad to be done with this port and onto a new solution that will hopefully be less troublesome. This complication, I am told by my oncologist, is not normal but is also not surprising. Surgery combined with a weakened immune system from chemotherapy is a perfect set up for this sort of scenario. Hopefully the recently added medications will help my body deal with the new port with a more positive outcome. 

Meanwhile, I really can't complain. I still have not experienced any major side effects from the chemotherapy. I have hair! It's thinner, but it's still there. That's a plus. I am tired, a lot, and fatigued if I do to much. I've experienced a few side effects, some I have already mentioned, others aren't worth mentioning. I know some people are counting on me to share how difficult dealing with cancer is but so far I'm not a good candidate for being that voice. Cancer stinks, no doubt about it. Makes life chaotic and makes me feel like I'm on the last half of my days on this earth rather than the first half like I used to feel but honestly I feel better now than I did for a very long time before being diagnosed. I joked about my oncologist prescribing medications, she does however jokingly refer to herself as "the pill doctor" though. I am on medications for all the symptoms I was suffering before being diagnosed in addition to medicines for the side effects of chemo so I'm really feeling better than I did when I was sick, coughing, itching and miserable. Besides a daily dose of steroids one of my chemo drugs is a steroid so that while I feel fatigued the day of chemo I am actually a bit wired and hyper the days following treatment. It does cause insomnia so I do eventually crash but until that point I am actually a little obnoxious. I've learned I can do things I want to do, it just will cost me something I have to plan on paying each day for the activities I choose to enjoy. Too much is a reality. For all the naysayers out there - I realize I am on treatment 3 of 12 and that harder days may very well be ahead, I also realize that expecting things to get worse is not healthy either so I'm just going one day at a time and praising God for each day of hair on my head and strength in my step. The family is pretty good at giving me reality checks as well. I was all set to go kayaking with the family, just planning our weekend. They all sort of gave me a  "you have to be kidding me" look. Lake kayaking is pretty hard work, I'm still not convinced I couldn't do a little river trip though - it's all downstream afterall. : )

I've been kind of somber spiritually this week. While I'm feeling better physically than I had been "promised" I would feel, there is an extra load on the family. Cancer does not just cost me, the whole family pays. Extra work for everyone, time without mom for young ones, irregular schedule and expectations. Angeline gave up a summer internship in Mexico. I had a hard time letting her do this but also realized she had to do it. Even if I didn't need her, I know she would not want to look back later in life on the summer she went to Mexico while her mom had cancer. Every time one of them asks me how I feel I am both blessed and somewhat burdened. It's hard as mom to watch them suffer. It's my job to protect them not be a source of their sorrow. What a wonderful problem, to be loved by my husband and children to the point of grieving over their grief. I am a really blessed individual. But somber is for a moment and blessing is forever. Tomorrow will hold new thoughts and feelings and in the years to come each family member will have a story of how this season grew and changed them. We are in a world full of sorrows, to be blessed to know comfort and love in the midst of them is a precious gift.

Final random thoughts: Our internet has been intermittent, part of living in the country. That's why the last blog had weird font problems I can't fix yet. Next week, which was again going to be my first quiet week is now also filled with appointments and surgery. David will post updates on Facebook I'm sure. I'm so grateful for family and friends who continue to pray. I appreciate so much the calls, notes and gifts. It's amazing how little things mean so much. This year is the first year we won't be picking strawberries and making jam. The day I was sad about this someone brought me a bowl of delicious fresh picked strawberries. Someone else sent me a nail cream the same day a nail peeled deep and was hurting. These little things just say I love you in such a big encouraging way. Thank you to each one praying, thinking about us and just having encouraging, loving thoughts in our general direction - it's overwhelmingly wonderful. Thank you.

Monday, June 3, 2013

"Our attitudes control our lives. Attitudes are a secret power working twenty-four hours a day, for good or bad. It is of paramount importance that we know how to harness and control this great force." - Irving Berlin

I stole this quote from a friends husbands blog. Eight months ago they added to their 9 children another 2 from China. It has been a challenging time for the family. They knew the girls had special needs but did not know the great extent of those needs. For one of the girls it has been eight months of hospital stays, shocking diagnoses, infections, amputation, surgeries, broken bones and requests for, "please pray she makes it through this next life threatening crisis." For the other of the girls it has been a time of finding a family who was willing to get to know her enough to learn, what no one else reported before, that she is severely autistic and has a very unique set of needs to be met. His wife's response to his voicing his exhaustion at what their lives have become was this, "We didn't do this to make our lives easier we did this to give these girls a chance to have a life, to be loved by a family. We did this to obey God's calling." 
One of the ways I keep my attitude up is by being challenged by the crazy wonderful people around me who have great attitudes no matter what comes their way. I have a college friend who has had cancer since just after we started having babies post-college. She has passed all the doomsday dates the oncologists have given her with each new diagnosis. One of the things she told me is that she has never not eaten. That might sound absurd but it's really a tremendous attitude. When you feel very sick, food is just not appealing. She has refused to drink any meal substitutes no matter how nauseas she felt, no matter how many sores filled her mouth which has had all it's taste buds dulled. No matter what, she eats real food. She is in exact contrast to the image I saw of the cancer patients the first time I walked into the cancer center.
These two friends and others with good and not so good attitudes, in addition to the admonishment in scripture, has inspired me to choose a good attitude. So far that has been fairly easy to do since I've experienced just tired and fatigue. I don't confuse bad attitude with I need to go home and rest now. I have observed that those with a good attitude seem to experience a more positive outcome. I have also observed that my oncologist smiling eyes join the smile on her face when she walks in the room to find me smiling. I'm blessed to have the opportunity to bless her with joy when I see her. 
Tomorrow is treatment number three. I think my port looks ok. The infection cleared up after the hospital stay but unfortunately appeared to be returning so I am back on anti-biotic. I was so glad to not have to return to the hospital, just a slew of more tests and scans. Have to see how it goes after treatment tomorrow. Worse case scenario, the current port will be pulled and another implanted under the other collar bone. I hope to avoid this additional surgery and scarring but I will maintain my commitment to not complaining as the doctors go about keeping me living. 
Treatment three was the promised magic number that would bring the side effects. We'll see how it goes. My hair is thinning so I look for the possibility of that exciting development moving along. I've had some mouth sores, fingernail peeling, nausea, bruising, slow healing cuts, etc. which could apparently all increase. Mostly tired and fatigue which will probably continue. So, the plan is, I'll sleep, thank the Lord for the absolutely most wonderful children in the world who keep the house going as if I'm not even needed. And, endeavor to continue to have a good attitude even if I'm tempted not to have one. David has always said, dealing with his blindness, that he can't pity himself too much because there is always someone nearby with a worse problem to keep him in check. For me that someone can easily be him, I get to be better soon but he keeps being blind - I can't really complain about being tired and bald when blind is on the table.