I just have time for a quick post but felt that an explanation was in order…
I’ve just changed the name of my blog from “Carrie’s NHL Blog”…BORING….to “Half Full”. It’s not terribly clever but for some time now I’ve been wanting to change the name of my blog to something that reflects where I am now. Half Full is both a literal reference to life with half a stomach for the last five years and a philosophical reference, reflecting my daily choice to approach the challenges that have resulted from NHL and my surgery in a positive way…my glass is “half full”. A few more changes coming soon…
Thanks to all who have followed my blog over the years and special thanks to those who have contributed their own experiences. We all learn from each other. Thank You! 🙂
A recent comment on my blog raised the issue of gastroparesis, delayed stomach emptying, a condition that I’m quite familiar with since the vagus nerve ran through the tumor in my stomach and was removed during my surgery. The following link discusses the condition and I would share that supplementing with magnesium has been beneficial to me in helping to keep things moving.
Recent visits with my oncologist and neurologist have gone well. Labs came back normal following my visit with the oncologist. I’ve experienced fatigue since the beginning of the year so I requested that a thyroid panel be added to our annual routine and, of course, iron and B12 levels were also checked. Results all came back normal. My own thoughts about the fatigue are two-fold: my regular muti-vitmain, Thorne Basic Nutrients III, had been out of stock so I had used a different brand at the beginning of the year. When I was able to return to my regular vitamins, my energy level improved. I also struggle regularly with SIBO and fungal overgrowth in my gut which causes morning headaches and fatigue. Altering (improving!) my diet to discourage dysbiosis also helps to alleviate the symptoms.
Yesterday I met with my neurologist and the gradual weaning off of the seizure medications continues. I’m now taking 250 mg Keppra once a day and 25 mg Topamax twice a day with plans to further reduce or completely eliminated the meds later this year. Now, five years post-surgery, I recognize the signs of hypoglycemia and realize that what I experienced in the year immediately following my partial gastrectomy were not epileptic seizures but blackouts due to extreme swings in blood sugar.
Forget gold, invest in iron! A few weeks ago I had my first iron transfusion and I’ve just recently received the statement from my insurance company. The cost for six hours, sitting in a chair while 1000 mg of iron dextran is slowly drips into my vein? Nearly $3000! Fortunately I am feeling better since the infusion (I had been experiencing fatigue, shortness of breath, irritability) but I hope that this will not become a frequent need.
For several months, I’ve been particularly fatigued, needing at least one nap before leaving for work in the afternoon. I sleep well at night and should feel well-rested and yet I’m fatigued and recognize the familiar symptoms of iron deficiency anemia. The results of my blood work from my recent annual visit with my oncologist were good…with the exception of my iron levels which remain at the low end of the normal range. I supplement with 27 mg ferrous gluconate, taken with vitamin C on an empty stomach but, as described in this article on Post-Gastrectomy Syndrome, my ability to absorb iron has been compromised by my surgery.
Wanting to have more energy, less fatigue, and prevent complications due to low iron levels, I’ve contacted my doctor about having a blood transfusion. We’ve discussed this course of action in the past but this will be my first transfusion…if my insurance company approves. I’ll keep you posted…. 🙂
Note: It has now been 4 1/2 years since my surgery.
Today I celebrate my first fifty years and look forward to the next fifty. If my life were to end now, it would have been a rich, full, rewarding and happy life…full of lessons learned, achievements won, love shared, and dreams fulfilled. But…this is only the halfway point….a time to reflect, a time to dream, a time to plan, a time to hope for the future…
Fifty is Fabulous! I’m not talking about Fifty Shades of Grey (not on my “to read” list)…but I thought that I would share “Thoughts about Fifty” from the book that I am reading currently….Diane Keaton’s memoir “Then Again”. As I was reading yesterday, I came to a passage where Diane talks about Goldie Hawn. I’ll edit Goldie’s comments (removing the parts that talk about fame)…I like what she had to say….
“The interviewer asked, “What’s better about being fifty than twenty?” Goldie plunged in with something like “Being a great mom; learning to grow up and love yourself for who you are; letting people be who they are; learning to be spiritually aware; learning to grow into self-esteem. Those are some of the reasons why being fifty is better than being twenty.””
I like Goldie’s list…and I could add to it, of course. I’m a much stronger person than I was at 20…and I’m even happier with how I look at 50 than I was at 20….grey hairs, wrinkles and all! 😉 I embrace every high and every low that I’ve face along the road up to this point because they’ve shaped the woman that I’ve become. I look to the future with equal anticipation for the highs and lows that will shape the woman that I am meant to be.
I had my six-month check up with my oncologist yesterday. The blood results that were available during my appointment all looked good…iron and B12 results will be available soon. Iron deficiency anemia and pernicious anemia (B12) are problems that can develop several years after surgery as the body’s stores of iron and B12 are used up in the immediate years after surgery.
This is a good article about post-gastrectomy syndrome.
On January 25th, I met with my neurologist, Dr. Holmes, for a regular six month check-up. I have been seizure for for nearly 2 1/2 years now and I’ve had no signs of seizure activity. I have had concerns, however, about the toll that my medication may be taking on my health. I told him that I was particularly concerned at work when, upon returning from a lunch break, I would experience slurred speech, dry mouth and an inability to concentrate for as much as an hour after eating. These are all possible side effects of Topamax. Another side effect of Topamax is bone loss…and since the acid blocker that I take and the fact that I am post-menopausal and diagnosed with osteopenia also contribute to future bone loss, I asked Dr. Holmes if we could try reducing the level of my medication. He agreed. Instead of taking 25 mg in the am and 50 mg in the pm, I now take 25 mg, twice a day. One week later, I still have had no seizure activity, the symptoms have improved and I have noticed an improvement in my mood…feeling happier and more optimistic, more motivated, with less effort. It’s not my nature to be “down” but, since going on the seizure medication, I have been very aware of their effects: suppressing my mood, my motivation, my appetite…my life! It is an emotional, mental and perhaps even a physical effort to rise above the medication and perform at the level that a person is capable of…to be the person that they are while on these medications. In addition to the Topamax, I still continue to take Keppra at dosage of 1500 mg, twice a day….and I’ll continue to hope that I can live a life without the medication.
I saw this link on Facebook today from “No Stomach For Cancer”:
Gifts for Gastrectomy Patients